Marrow Masters: Recent Episodes
The National Bone Marrow Transplant Link
This podcast series educate patients, caregivers, and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant and Car-T cellular therapy. Our newest addition, Season 6, covers Graft Versus Host Disease, or GVHD. In previous seasons, we've covered all things survivorship (Season 5), the caregiver perspective (Season 4), the patient perspective (Season 3), busting marrow myths (Season 2), and chronic GVHD (Season 1).
Today, Peggy Burkhard talks with Dr. Amar Kelkar of the Dana-Farber Cancer Institute about the medical side of survivorship after bone marrow, stem cell, or CAR-T transplant. The conversation begins with the important shift from the urgent “save my life” phase to the longer “protect my health” phase. Dr. Kelkar explains that this transition often starts around the 100-day mark, though timing varies by transplant center, geographical region and patient needs.
A major theme is the need to restart routine care that may have been paused during transplant. Dental care, dermatology, ophthalmology, and primary care all become important again. Dental visits are especially important because oral graft-versus-host disease (GVHD) can cause dry mouth, irritation, cavities, and other problems. Skin checks matter because transplant can increase the risk of skin cancers. Dr. Kelkar stresses annual dermatology visits, sun protection, SPF 50 or higher, protective clothing, and smart decisions about sun exposure.
Fatigue is another central topic. Dr. Kelkar describes post-transplant fatigue as different from normal tiredness. It can feel deep, physical, and mental, and it may last for months or even years. He encourages patients to pace themselves, listen to their bodies, and build activity back slowly. Returning to work also needs to be individualized. Some patients work remotely during treatment, while others may need extended disability or a gradual return.
The episode also covers immune recovery and repeat vaccinations. Dr. Kelkar explains that after transplant, the immune system has been reset, and many childhood vaccines need to be repeated. Most programs begin revaccination around six, nine, or 12 months, depending on immune suppression and other factors. He reassures listeners that many patients have fewer vaccine symptoms early on because their immune systems are still rebuilding.
Dr. Kelkar also reviews long-term screening and prevention. Survivors need routine cancer screenings, including mammograms, colonoscopies, lung cancer screening when appropriate, skin exams, and monitoring for thyroid or other changes. Metabolic health is also important. Steroids can affect blood sugar, transplant can change body composition, and quick weight loss often includes muscle loss. Nutrition support and exercise programs can help, and Peggy notes that Blood Cancer United offers nutrition services for patients and caregivers. Blood Cancer United’s nutrition program provides free one-on-one consultations with oncology dietitians by phone or email.
Bone health, hormone changes, sexual health, and early aging are also discussed. Dr. Kelkar explains that steroids, menopause, testosterone changes, vitamin D deficiency, and time indoors can affect bones. Many centers use DEXA scans and vitamin D supplementation. He also encourages patients to bring up sexual health concerns, including menopause symptoms, low testosterone, pain with intercourse, ulcers, or fear about resuming intimacy.
The episode closes with practical advice for everyday life. Food restrictions often loosen around 100 days, but patients should reintroduce foods slowly and carefully. Raw foods, alcohol, tobacco, and inhaled smoke should generally be avoided, especially during the first year. Dr. Kelkar also emphasizes mental health support, counseling, and honest conversations with the medical team. Survivorship is a bumpy road, but the goal is to help patients regain control and thrive.
Blood Cancer United Nutrition Offerings: https://bloodcancerunited.org/blood-cancer-care/adults/food-nutrition
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Intro
(01:16) Moving from acute treatment to survivorship
(02:17) Dental, dermatology, ophthalmology, and routine care
(05:45) Fatigue after transplant versus normal tiredness
(08:35) Pacing yourself and avoiding setbacks
(10:26) Returning to work after transplant
(12:24) Resetting the immune system and repeat vaccinations
(16:07) Secondary malignancy prevention and cancer screenings
(18:59) Sun protection and skin cancer prevention
(20:23) Metabolic health, blood sugar, and weight management
(23:58) Bone health, vitamin D, DEXA scans, and early aging
(29:32) Sexual health and hormonal changes
(32:43) Everyday living after transplant
(36:07) Psychological and cognitive hurdles in survivorship
(38:16) Pulmonary function tests and liver monitoring
(40:42) Closing thoughts
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode of Marrow Masters, Peggy Burkhard talks with caregiver Ashlee Cramer about what caregiving really looks like during cancer, bone marrow transplant, and survivorship. Ashlee shares the story of her son Michael, who was diagnosed in 2020 with hepatosplenic T-cell lymphoma. Their family had already lived through cancer once before, when Ashlee’s husband Patrice was diagnosed with large B-cell lymphoma in 2014 and later died at home in hospice, surrounded by his family.
Ashlee explains that caregiving is often misunderstood. Caregivers are not saints who always feel strong, positive, or ready. Many are scared, exhausted, grieving, and trying to manage jobs, children, finances, appointments, medications, and the emotional weight of watching someone they love suffer. She says caregivers often feel pressure to do everything alone, but that pressure can lead to burnout and isolation.
The conversation focuses on the reality that caregiving is not always temporary or predictable. For Michael, treatment moved quickly from diagnosis to hospitalization to transplant. He received a stem cell transplant from an anonymous donor, went into remission, and then developed serious complications, including engraftment syndrome, acute graft versus host disease (GVHD) , and chronic GVHD. Ashlee says Michael is a miracle, and while GVHD remains part of his life, the key word is living.
Ashlee also talks about mental health for caregivers. She names anxiety, depression, post-traumatic stress disorder (PTSD), burnout, and loneliness as common experiences. She points out that many cancer centers offer support for patients, but caregivers often have to search for help on their own. Support groups, virtual programs, and caregiver resources can make a major difference because connection helps people feel less alone.
A central message of the episode is that caregivers need care too. Ashlee encourages caregivers to take small pockets of peace when they cannot take a full day away. A shower, a breathwork practice, a walk outside, a cup of coffee, or a short hug from another caregiver can help. She also reminds caregivers to accept help. A meal train, a friend waiting in the hospital lobby, or someone offering a few minutes of support can ease the load.
The episode ends with hope. Ashlee talks about post-traumatic growth, or PTG, and the idea that people do not have to bounce back to who they were before trauma. They can bounce forward. Michael and Ashlee continue to advocate, share their story through their podcast Michael and Mom Talk Cancer, and remind other caregivers that they are not alone.
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00 Intro
(04:05) Misconceptions about caregiving and why caregivers are not saints
(05:30) Why caregivers should not be expected to do everything alone
(07:00) The pressure to “stay strong” and how it can isolate caregivers
(09:49) The reality of caregiving and how much it affects mental health
(12:03) Work, family, sacrifice, and the myth of balance
(16:40) Caregiver anxiety, depression, PTSD, burnout, and the need for support
(20:40) Finding small “pockets of peace” when a full break is impossible
(23:10) What Ashlee wishes she knew earlier about speaking up and asking questions
(24:59) Why accepting help matters and how a meal train supported her family
(34:09) Post-traumatic growth and the idea of bouncing forward instead of bouncing back
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode of Marrow Masters, we talk with Adam Claxton, a British acute myeloid leukemia (AML) survivor who was diagnosed in 2024 and received a transplant in December 2024. He shares what early survivorship really feels like, especially the part no one prepares you for. Once treatment slows down, there is a gap between being a patient and figuring out who you are in the world again. Adam explains that around the 100 day mark, he felt dropped out of the system and forced to ask where he fit, what had changed, and who he was becoming after transplant.
We also discuss graft versus host disease (GVHD) and how Adam reframes it. He calls it the price he pays for leukemic protection. That shift in perspective helps him see chronic GVHD not only as a complication, but also as evidence that the donor cells are doing their job. He is honest that it can be difficult physically and mentally, but he chooses to view it as part of survival and a sign that his body is being protected.
A major focus of the conversation is mindset. Adam talks about mindset as something we have to work on daily, just like updating a device. He believes our thoughts shape how we feel, behave, and respond, and that mental habits matter just as much as physical recovery. He also opens up about relapse, calling it an even harder battle than the initial diagnosis. What helps him move through it is staying connected to his reasons for going on, including his family, his purpose, and his desire to help more people with his voice and experience.
The episode also looks at faith over fear. Adam says both fear and faith still take you through the day, so he would rather choose the path that gives him hope. That same thinking connects to what he calls the reset after transplant. He realized he could not simply return to the same life, work, and identity he had before cancer. His priorities had changed, and so had his sense of purpose. Instead of trying to recover the old version of himself, he began building a new one.
On a practical level, Adam shares advice about routines, mindfulness, exercise, social media boundaries, and finding joy again in simple things. One of his best suggestions is to go back to the things you loved doing around age 12, because those activities often reconnect you with peace, play, and presence. He also speaks warmly about the importance of support, especially from his wife and children, while reminding us that caregivers carry their own emotional burden too.
By the end, Adam leaves listeners with a clear message. Survivors need to be kinder to themselves, own their stories, and start sharing what they have learned. His closing affirmation says it best: we can, we will, we must.
More: Adam's Book, Daddy's Magic Blood, on Amazon: https://www.amazon.com/Daddys-Magic-Blood-story-healing/dp/B0GLGXHGW6
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Intro
(01:52) The gap after treatment and early survivorship
(03:52) Why survivorship can feel harder than treatment
(07:24) Mindset and daily mental conditioning
(10:23) Handling relapse and staying connected to purpose
(13:20) Faith over fear
(15:31) The post transplant identity reset
(23:19) Social media, support, and emotional boundaries
(26:50) The role of family and caregiver support
(29:12) What survivors need more of
(32:28) Final affirmation: We can, we will, we must
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode of Marrow Masters, we speak with Stephanie Chuang, founder and chief storyteller of The Patient Story. Stephanie shares how her life changed at 31, just two months before her wedding, when she was diagnosed with lymphoma. At the time, she was working as a TV news reporter in San Francisco and had been explaining away symptoms like fatigue, bloating, and a strange cough. A same day doctor’s visit led to blood work, an x-ray, an emergency CT scan, and then the call that confirmed lymphoma.
Stephanie talks about the shock of diagnosis and the fear that followed. She also shares how much it mattered to have people around her who understood how to navigate the health care system. A family friend who was a doctor helped her get into care quickly, showed her what steps to take, and became a human compass during a frightening time. That experience stayed with her. It helped shape the reason she later created The Patient Story, so others would not have to feel so alone after diagnosis.
The conversation then moves into survivorship and the emotional whiplash that can happen when treatment ends. Stephanie explains that hearing “no evidence of disease” was a huge relief, but it did not mean life went back to normal. She felt grateful, but she also felt lost. Her identity as a journalist, fiancé, daughter, sister, and busy person had been shaken. She could not simply return to the same pace or the same version of herself.
Stephanie also talks about scanxiety and the surveillance cycle. She describes how difficult it can be to move from frequent monitoring to longer gaps between appointments. Graduating from three month checks to six month checks can feel like progress, but it can also feel scary. She explains that giving herself permission to feel anxious, without adding shame, helped her cope.
We also talk about the phrase “the new normal” and the late effects that can follow intense treatment. Stephanie shares that survivorship requires more support than many people realize, especially when patients move from oncology care back to primary care. She emphasizes the importance of meeting people where they are, validating their fears, and helping them feel less alone.
The episode closes with Stephanie’s message to newly diagnosed patients: you are not alone, your questions matter, and you deserve to speak up in the doctor’s office. The Patient Story exists to share honest, hopeful stories that help people find connection, information, and courage.
Links:
The Patient Story: https://thepatientstory.com/
Bag It Cancer: https://bagitcancer.org/
Escape to THRIVE: https://escape4advocates.org/
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Intro
(01:34) Stephanie begins her cancer story
(06:01) Navigating the medical system with help from a doctor friend
(07:16) Hospital testing, biopsy, and the idea behind The Patient Story
(08:35) Moving into survivorship
(10:14) Identity, work, and life after cancer
(13:03) Scanxiety and the surveillance cycle
(16:31) Survivor guilt and transitioning back to primary care
(17:47) Identity loss after leaving a news career
(23:21) The phrase “the new normal”
(26:36) Meeting people where they are in survivorship
(28:16) The power of patient storytelling
(28:41) Caregivers, care partners, and family support
(30:20) Advice for newly diagnosed patients
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Today, Peggy talks with Daniel Gaylor, LCSW, OSW-C, ACHP-SW, and a social work supervisor at Moffitt Cancer Center, about what happens after patients and caregivers get through the intense treatment period and begin asking, “Now what?” Daniel explains that recovery does not mean life snaps back to normal. Survivorship brings fear, relief, hope, uncertainty, and exhaustion all at once. Those reactions are normal, and they deserve to be named.
Daniel explains why post-traumatic stress disorder (PTSD) can show up after transplant. A transplant is not a routine treatment. It can involve long hospital stays, isolation, major physical side effects, and real fears about survival. When patients return for follow up visits, they may be brought back emotionally to those difficult hospital days. This can make survivorship feel complicated, even when the transplant was successful.
Another key theme is slowly letting go. Patients may feel afraid to go out, socialize, eat in a restaurant, drive, or return to activities they once enjoyed. Daniel encourages survivors to start small and to be fair to the situation. It is easy to imagine the worst case. But it also helps to keep yourself honest - say out loud what could happen if things go well.
The episode also addresses the “strain of worry.” Daniel describes signs of anxiety and depression, including sleep problems, racing thoughts, trouble concentrating, irritability, sadness, appetite changes, and not wanting to do things that usually bring joy. He reminds listeners that difficult days do not mean failure. Survivors should be able to say, “Today is not my best day,” and ask for help.
Peggy and Daniel also talk about toxic positivity. While loved ones often mean well, phrases like “you’re lucky to be alive” can minimize a survivor’s fear or pain. Daniel encourages honest communication. Patients can thank loved ones for their support while also explaining what would help more.
Social connection is another major part of healing. Daniel urges survivors and caregivers to increase connection and reduce isolation. A quick text, a short call, a support group, or a shared conversation can make a real difference. Peggy highlights programs where survivors can meet others who understand graft versus host disease (GVHD) and transplant recovery.
Daniel closes with the idea of building a “tool belt.” Each person needs practical coping tools, whether that is a friend, music, journaling, counseling, mindfulness, a book, or a favorite place to reset. Caregivers need their own tool belts too. Transplant affects the whole support system, and survivorship works best when people communicate, ask for help, and remember they are not meant to do this alone.
Links:
- Elephants and Tea: https://elephantsandtea.org/
- BMT InfoNet: https://bmtinfonet.org/
- Blood Cancer United: https://bloodcancerunited.org/
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Intro
(01:01) Normalizing emotional reactions during recovery
(04:22) PTSD after transplant and why it matters
(08:59) Slowly letting go after transplant
(13:12) Facing the worst case and choosing to move forward
(13:53) The strain of worry and mental health red flags
(19:31) Toxic positivity and the power of validation
(20:26) How to talk with loved ones who are trying to help
(22:39) Social health, connection, and friendship
(26:43) Support groups, GVHD, and feeling understood
(28:07) Building a survivorship "tool belt"
(33:08) Why transplant never fully “stops”
(36:39) A patient story about resilience and asking for help
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk with Christy Donovan, DNP, RN, a Blood Cancer Coordinator at the the Blood and Marrow Transplant/ Leukemia Program at Northside Hospital Cancer Institute, about what survivorship really looks like after a stem cell transplant. The central message is that survivorship is not a finish line. It is a transition into a new normal. Many patients expect life to return to the way it was before diagnosis or transplant, but recovery usually feels slower, messier, and more emotional than that. Fatigue, side effects, fear, and frustration can last for months, and that does not mean something is wrong. It means recovery is still happening.
We also focus on how important it is to set realistic expectations. Christy explains that early struggles do not define long term outcomes. A setback in the first weeks or months after transplant does not mean a patient will not go on to live a full and meaningful life. Recovery takes patience. Small wins matter. Walking to the mailbox, cooking a meal, or getting through a day with a little more energy can be major milestones. Over time, those moments add up.
Another major theme is emotional recovery. We talk about the fear of recurrence and the challenge of learning what is normal after treatment versus what should be reported to a doctor. That education helps people feel more confident and less trapped by fear. We also touch on how easy it is to forget that some aches and pains may simply come with getting older, not always with cancer. That perspective can be grounding. Other survivors can be a valuable information resource, too.
Support comes up again and again throughout the conversation. Caregivers remain important in survivorship, but their role changes. Friends, peer support, support groups, podcasts, and survivorship communities all help patients feel less isolated. Christy emphasizes the value of honesty and vulnerability, especially in telling people what kind of support is needed on a given day. Some days call for celebration. Some days call for rest.
We also talk about the tension between wanting to get back to life and needing to stay safe. Many survivors ask when they can return to work, travel, attend church, or see family. That desire is a good sign. It shows hope. At the same time, it takes guidance from the healthcare team to know when and how to widen that protective bubble.
The episode ends on a hopeful note. Christy shares that she does not think of one survivor story. She thinks of many faces. She describes the joy of seeing patients return months later looking stronger, brighter, and more like themselves. That image captures the heart of the episode. Survivorship is hard, but it is also full of possibility, growth, connection, and life after transplant.
More:
- Northside Hospital Cancer Institute Blood & Marrow Transplant Program — https://www.northside.com/services/cancer-institute/cancer-treatment-options/blood-marrow-transplant-program
- Northside Hospital Cancer Institute Blood Cancer Program — https://www.northside.com/services/cancer-institute/cancer-programs/blood-cancer-program
- National Bone Marrow Transplant Link (nbmtLINK) — https://www.nbmtlink.org/
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Introduction
(00:40) Meet Christy Donovan
(01:42) Survivorship as a transition
(03:00) The role of caregivers and support after transplant
(03:38) Early struggles vs long term outcomes
(05:41) Emotional impact and fear of recurrence
(07:02) Learning what is normal and what is not
(07:55) Support groups, healing arts, and community
(08:44) Being honest with friends about what you need
(09:34) Managing energy and celebrating small wins
(11:02) Patience, hope, and finding your people
(13:15) Common questions in early survivorship
(14:27) Expanding the protective bubble
(15:20) The many faces of survivorship
(17:03) Final encouragement and close
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Season 20 of the Marrow Masters Podcast, produced by the National Bone Marrow Transplant LINK, focuses on thriving in survivorship post-transplant. You'll hear from patients, caregivers, doctors and social workers as they share their best tips and practices. Season 20 of the Marrow Masters Podcast is sponsored by Incyte and Sanofi.
Look for Season 20 on May 27, 2026. And be sure not to miss an episode! Follow our show for free on Apple, Spotify, YouTube, or wherever you're listening right now.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Recently, Peggy attended the Tandem 2026 meeting in Salt Lake City, Utah. While there, she sat down as a guest on the Eurofins Viracor Transplant Radio podcast. We wanted to share that interview with you. If you'd like to follow their podcast, you can do so at the links below.
We learn today from Peggy Burkhard that transplant is not just a medical experience — it’s an emotional, creative, and community‑driven journey that patients, caregivers, and families navigate together.
Peggy shares how the National Bone Marrow Transplant Link has evolved since its founding in 1992, offering a wide range of free programs that support patients from diagnosis through survivorship. She highlights the often‑overlooked emotional load carried by caregivers and explains how "the Link" (nbmtLINK), builds connection through healing arts sessions, book clubs, lunch‑and‑learn programs, and survivorship education.
We hear about their thriving “Marrow Masters” podcast with 160+ episodes and 40,000 downloads, as well as their expanding resources such as Spanish‑language materials, financial guidance books, and partnerships with groups like the GVHD Alliance and Blood Cancer United. Peggy also gives an inside look at GVHD Awareness Day and the organization’s growing social media footprint, which helps elevate patient voices and practical wisdom to the global transplant community.
Hosted by Kevin Foth of Eurofins Viracor.
Episode Links:
Peggy Burkhard | LinkedIn
The LINK (nbmtLINK)
Meredith A. Cowden Foundation
GVHD Alliance
Marrow Masters Podcast by nbmtLINK
Be a Guest on our Show!
We’re always looking to speak with the transplant community.
To be considered, please email ---> Amplify your influence!
📧 US42-DL-MarketingTeam@Viracor.EurofinsUS.com
Social Media:
LinkedIn | X-Twitter | Facebook | Threads | YouTube | Bluesky
The discussions in this podcast are meant to inform and spark conversation, not to provide medical advice. For guidance on personal health questions, diagnoses, or treatment decisions, always speak directly with a licensed healthcare professional.
For more information visit: Eurofins-Viracor.com or call (800)305-5198
Copyright © 2026 Eurofins Viracor, LLC. All Rights Reserved. 🎧 Home of Transplant Radio™
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Dr. Joseph Pidala from the Moffitt Cancer Center to discuss chronic graft-versus-host disease (GVHD), a complex condition affecting many stem cell transplant survivors. We focus on the latest prevention strategies, treatment innovations, and the critical role that clinical trials continue to play in advancing care.
We begin with promising news around prevention. Dr. Pidala shares data from the BMT CTN 1703 trial, which compared conventional GVHD prevention to a newer approach using post-transplant cyclophosphamide (PTCy). This newer strategy significantly reduced the incidence of both acute and chronic GVHD, signaling a major step forward in preventing this debilitating condition.
Despite advancements, many patients still experience chronic GVHD, which drives the need for new treatments. We explore several groundbreaking clinical trials that are rethinking traditional steroid-heavy treatment protocols. One study is testing Rezurock (Belumosudil) as a preemptive treatment during early symptoms, while another is investigating whether Jakafi (Ruxolitinib) can be used as a first-line treatment to reduce steroid reliance. These trials challenge old norms and aim to improve long-term outcomes.
We also take a look at the four FDA-approved therapies currently available for steroid-refractory chronic GVHD: Ibrutinib, Jakafi, Rezurock, and the most recent addition, Axatilimab (Niktimvo). These drugs, each with different mechanisms and side effects, give patients and clinicians more flexibility than ever before. We touch on other widely used therapies like ECP (photopheresis), which, while not FDA-approved, remain an important part of care.
Patient involvement is a key theme throughout. Dr. Pidala emphasizes that progress would be impossible without those who enroll in clinical trials, sharing inspiring examples of patients who benefited from early access to now-approved drugs. He encourages patients to advocate for themselves and speak up about symptoms, improvements, or quality of life changes. Patient-reported outcomes are becoming standard in trials, offering critical insight into treatment success from the patient's perspective.
Dr. Pidala also highlights the importance of addressing GVHD holistically. Beyond core treatments, supportive care—including help with dry eyes, itching, joint mobility, pain, and mental health—is crucial to improving day-to-day life. He stresses that long-term recovery is possible and shares a moving story of a young woman with severe GVHD who, through persistent treatment, regained functionality and returned to a fulfilling life.
We close with advice for patients: be proactive, informed, and open to trial participation. And when seeking information on trials, always start by asking your clinical team—they’ll know what’s available and suitable for your specific situation. Above all, Dr. Pidala leaves us with a message of hope—there’s real progress being made, and the future looks brighter than ever.
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:40 – Introduction to Dr. Joseph Pidala
01:21 – New GVHD Prevention Approaches
02:44 – Why Clinical Trials Matter
03:22 – Challenging Steroid-Based Treatment Norms
06:14 – Timeline for New Treatment Results
07:02 – FDA-Approved Drugs for Chronic GVHD
09:09 – Individualized Treatment Approaches
10:69 – The Role of Patient-Reported Outcomes
13:44 – Symptom Management and Supportive Care
15:20 – Addressing Mental Health in GVHD
17:30 – Inspirational Patient Story
21:12 – Advice for GVHD Patients
23:02 – How to Find Clinical Trials
25:06 – Final Thoughts and Message of Hope
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we speak with Rebecca Heimsoth, a young mother and survivor of myelodysplastic syndrome who underwent a bone marrow transplant in April 2022. Diagnosed shortly after turning 33, Rebecca shares her deeply personal journey of navigating transplant recovery, chronic graft-versus-host disease (GVHD), and parenting two small children. Her story is one of resilience, support, and a constant fight to reclaim her life after cancer.
We begin by learning how Rebecca’s transplant process unfolded with the support of her family. Her mother stepped in as her full-time caregiver while she temporarily relocated over an hour away from home for five months, separated from her children. Her youngest sister was a full match donor, which initially reduced concern for GVHD—until lung GVHD symptoms appeared five months post-transplant. This diagnosis triggered new fears, especially around survival, and marked the beginning of her chronic GVHD journey, which later expanded to include fascia involvement. Rebecca explains the physical and emotional toll—early menopause, chronic fatigue, cognitive effects, and mobility challenges.
We discuss how she manages flare-ups with physical therapy, walking, stretching, and even cupping. Despite the physical setbacks, Rebecca remains actively involved with her family, thanks to a flexible job, long-term disability support, and a strong support system. Her husband takes on parenting duties when her health dips, and her kids have learned small routines to help protect her from illness, such as wearing masks and showering after school. These steps, while difficult, have helped them all cope as a unit.
Rebecca also opens up about the mental health side of survivorship—dealing with PTSD, depression, and a sense of loss over her former self. She credits her psychologist, psychiatrist, and peer support groups as vital tools for managing the psychological weight. Online and in-person GVHD groups have connected her to other young adults navigating similar terrain, helping her feel less alone.
Despite not returning to her full-time career, Rebecca is finding meaning in her part-time work and family life. Her goals have shifted—from professional advancement to simply watching her kids grow up. Whether it's family vacations or bedtime snuggles, she cherishes these moments. Her ultimate aim is to be present for her daughter’s high school graduation in 2037. Every step forward, no matter how small, is part of the victory.
Want to connect with a Young Adult Survivor Group? Find Kim on Instagram at @YourCancerBestie - http://instagram.com/yourcancerbestie
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:40 – Introduction to Rebecca Heimsoth
01:00 – Diagnosis at Age 33 and Initial Symptoms
02:07 – Preparing for Transplant and Family Separation
04:20 – Emotional Toll and Health Concerns
06:20 – Importance of Physical Therapy and Walking
06:53 – Balancing Flare-Ups, Appointments, and Parenthood
08:20 – Role of Caregivers: Mom and Husband’s Support
09:43 – Kids’ Resilience and Coping with Germ Concerns
11:13 – Creative Ways to Explain Cancer to Children
13:57 – Impact on Friendships and Social Life
16:25 – Finding Online Support Networks and Groups
17:43 – Meeting a Fellow Survivor in Person
21:35 – Advice for Managing GVHD Symptoms
23:16 – Navigating Nutrition with a Busy Family
24:40 – Cognitive Health and Chemo Brain Hacks
27:52 – Life After Transplant: Gratitude, Travel, and Parenting
30:56 – Career Impact and Redefining Success
32:23 – Living for the Milestones and Creating New Goals
32:51 – Final Reflections and Words of Thanks
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Sue Stewart, a 36-year survivor of acute myeloid leukemia (AML) and the founder of BMT InfoNet. Sue walks us through her transplant journey, beginning with a difficult diagnosis in the late 1980s and the grueling induction chemotherapy that followed. With limited treatment options, she opted for an autologous bone marrow transplant—a relatively new and uncertain procedure at the time. Despite the intense side effects, including confusion and delusions, Sue recovered and slowly rebuilt her life. Her story is one of strength and long-term resilience, shaped by medical challenges and a determination to help others facing similar paths.
After surviving her transplant, Sue felt driven to understand her experience and quickly saw the gap in patient-centered information. A high-profile court case involving bone marrow donation misinformation pushed her to act. In response, she started a small newsletter to provide reliable, understandable transplant information. What began with 700 names (pre-Internet) grew rapidly and became BMT InfoNet, an organization that now supports over 20,000 people weekly with resources, educational content, and peer support.
We explore how GVHD care has transformed over the decades. Sue outlines progress in diagnostics, treatment options, and the move away from long-term steroid reliance. Her organization has helped shift the focus beyond survival to long-term quality of life, leading to the creation of survivorship clinics and a deeper understanding of transplant-related complications.
Sue introduces us to BMT InfoNet’s key programs, including Caring Connections, which matches patients and caregivers with peers based on similar experiences. We also learn about their online, professionally moderated support groups, offered to different patient communities. These groups have been instrumental in helping individuals process their experiences and stay connected.
The organization’s educational materials and annual survivorship symposium continue to empower patients to become active members of their care teams. Sue emphasizes the importance of recognizing symptoms early, understanding treatment options, and advocating for proper care—especially for GVHD, which many local doctors may not fully understand.
Finally, Sue shares the story of how one patient’s experience with ocular GVHD and scleral lenses led to a wider medical breakthrough. It's a powerful reminder of how patients can change the landscape of care by sharing their stories. BMT InfoNet's mission remains clear: provide support, share knowledge, and give voice to those on the transplant journey.
BMT InfoNet: https://www.bmtinfonet.org
Contact Email: help@bmtinfonet.org
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:40 - Introduction to Sue Stewart
01:15 - Sue’s AML Diagnosis and Transplant Story
06:33 - Founding BMT InfoNet
10:05 - Life Before the Internet: Lack of Resources
12:43 - Progress in GVHD Treatment
15:25 - Peer Support Through Caring Connections
17:16 - Online Moderated Support Groups
18:58 - Educational Resources on GVHD
21:57 - GVHD Specialist Directory
24:05 - Annual Survivorship Symposium
26:17 - Financial Assistance for Patients
27:39 - GVHD Wall of Hope and National GVHD Day
30:01 - Final Story: How Patient Experience Changed GVHD Care
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Note: This episodes contains discussion and language of a sexual nature and may not be appropriate for all audiences.
In this episode of Marrow Masters, we sit down with Dr. Christian Nelson, a psychologist at Memorial Sloan Kettering Cancer Center and an expert in psycho-oncology, to address a deeply personal yet often overlooked topic: male sexual dysfunction following cancer treatment. Together, we explore how treatments can impact not only physical function but emotional well-being, identity, and relationships.
We start by acknowledging that sexual dysfunction is one of the most common side effects of cancer treatment, second only to fatigue. Yet, it’s rarely discussed. Dr. Nelson emphasizes the importance of normalizing the conversation and encouraging patients to raise the issue with their treatment teams. He walks us through the emotional toll that erectile dysfunction can take on men, noting how it strikes at the core of masculinity and can lead to increased depression, frustration, and a general sense of brokenness. He stresses that it’s not just about what happens in the bedroom—erectile issues can spill over into all aspects of a man’s life, including his relationship with his partner.
Dr. Nelson outlines a range of treatment options, from well-known medications like Viagra to lesser-known but effective methods like penile injections and implants. He breaks down the fear around these options, especially injections, and highlights how pain levels are often far lower than anticipated. Beyond physical treatments, we discuss the emotional and relational work that’s often required. One key issue is avoidance—men avoiding sexual situations due to performance anxiety, which can snowball into long-term distance and silence between partners. Dr. Nelson makes it clear: the real risk isn’t failure, it’s not trying.
We also dive into how couples can redefine intimacy. Many men associate sex solely with penetration, while their partners often value closeness and emotional connection more. Dr. Nelson advocates for expanding the sexual repertoire and restoring non-sexual forms of affection, which can be just as meaningful. We talk about the impact of testosterone—how its depletion can lower libido and cause men to unknowingly withdraw from their partners—and how testosterone replacement may be a viable option for some, depending on cancer type and treatment history.
As roles shift from caregiver back to partner post-treatment, Dr. Nelson stresses the importance of open communication. He urges couples to work toward understanding each other's perspectives, not convincing each other. He shares an "aha" moment involving a couple who waited five years before seeking help, only to reconnect within three sessions after simply opening the lines of communication. The takeaway: don’t wait.
We close by pointing listeners toward additional resources, including certified sex therapists and specialized urologists, and Dr. Nelson highlights two key professional directories: SSTAR and AASECT. We’re reminded that even the simplest questions—like whether it's okay to kiss your partner—deserve answers. It’s on all of us, both patients and providers, to make room for these conversations.
More:
Episode with Dr. Flores: https://marrowmasters.simplecast.com/episodes/mens-sexual-health-gvhd
Episode with Dr. El Jawahri: https://marrowmasters.simplecast.com/episodes/dr-el-jawahri
SSTAR (Society for Sex Therapy and Research) – https://sstarnet.org
AASECT (American Association of Sexuality Educators, Counselors and Therapists) – https://www.aasect.org
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:00 - Introduction to Season 19 and Dr. Christian Nelson
01:16 - Normalizing Conversations on Sexual Dysfunction
04:50 - Emotional Toll of Erectile Dysfunction
07:06 - Treatments: Pills, Injections, and Implants
09:03 - Avoidance and Anxiety in Sexual Relationships
12:17 - Expanding the Definition of Intimacy
16:43 - Role of Testosterone in Sexual Health
20:05 - Shifting from Caregiver to Partner
22:17 - Resources and Where to Get Help
26:29 - A Patient Story: Five Years of Silence
28:07 - Closing Thoughts and Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we speak with Synary Be, a resilient survivor of acute myeloid leukemia (AML), who shares her powerful journey of enduring three bone marrow transplants over eight years. Diagnosed suddenly in March 2017, Synary’s story begins with a high fever that led to a shocking diagnosis: 93% leukemia. From that point on, her life transformed into a series of hospital stays, treatments, and moments that tested her strength and spirit.
We learn how her first transplant involved two umbilical cord donors, one from the U.S. and another from Singapore. When that failed to graft, her younger brother flew from Australia to donate for her second transplant—a 50% match. After two years in remission, she relapsed again and required a third transplant, this time from her older brother, right in the midst of the COVID-19 pandemic. With travel restrictions in place, the donor cells had to be processed remotely and shipped to Stanford, showcasing the remarkable role of medical technology in saving lives.
Despite being given only a 50% chance of survival for her third transplant, Synary put her trust in her doctors. Though she relapsed again, she now maintains remission through chemo pills. With no long-term data available for this new medication, she continues treatment cautiously and with optimism, trusting in the advancement of medicine.
Synary spends some time opening up about the chronic graft-versus-host disease (GVHD) that followed her transplants. She explains its impact on her lungs, eyes, mouth, nails, and skin, detailing both the physical symptoms and the treatments that have helped her reclaim daily life. From scleral lenses to serum tears, to pulmonary rehab and steroid creams, she educates us on the challenges and management of GVHD.
Beyond the physical toll, Synary discusses the mental health struggles tied to long-term illness—particularly anxiety from repeated hospitalizations. She emphasizes the importance of therapy, meditation, support groups, and the courage to seek help. Her words serve as a reminder that managing chronic illness includes caring for both mind and body.
Synary's story wouldn’t be complete without acknowledging her support system. Her husband, who acted as her full-time caregiver through 300 cumulative days of hospitalization, and her three children, endured major sacrifices. Friends and community support filled in the gaps, underscoring that no one should navigate transplant recovery alone.
Even in the face of isolation, fatigue, and anxiety, Synary finds joy in simple pleasures: watching Christmas movies, going for walks, and spending time with family. Her message is clear—life is still good. And GVHD, while challenging, cannot take away her joy.
Calm App — https://www.calm.com
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:40 - Introduction to Synary Be
01:20 - AML Diagnosis and First Transplant
03:10 - Transplants and Donor Challenges
04:06 - Relapses and Chemo Maintenance
06:44 - Living with GVHD
12:15 - GVHD Symptoms and Treatments
13:40 - Support System and Caregiving
15:34 - Isolation After Transplants
16:38 - Mental Health & Anxiety
19:03 - Coping and Finding Joy
20:36 - Final Thoughts and Message of Hope
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk with caregiver Sylvia Chunn of Nashville, who shares her journey alongside her husband David through his diagnosis of AML, a stem cell transplant, and the ongoing challenges of GVHD. Sylvia walks us through their intense timeline, from David’s emergency diagnosis in January 2024 to his transplant in July and their extended stay in Atlanta, away from home and their teenage children, until February 2025. Her husband’s transplant was successful in its purpose, but complications like heart failure and GVHD turned their lives upside down.
We explore the caregiving experience through Sylvia’s eyes, especially navigating chronic GVHD symptoms that affect David’s gut, eyes, mouth, joints, and skin. She explains how their lives are now filled with medical appointments, medications, and managing side effects from treatment. Sylvia describes her role as a blend of cheerleader and drill sergeant, ensuring medications are taken and appointments kept, while also offering emotional support.
Sylvia emphasizes the importance of self-care during the process. With limited financial flexibility, she found peace in simple things like reading through a Facebook book club, daily personal devotions, and leaning on her faith. Exercise helped at times, although maintaining consistency was difficult. She openly shares that she sought mental health support, including therapy and medication, to deal with stress, guilt, and isolation.
The conversation turns to how this journey has affected intimacy and family dynamics. Sylvia candidly reflects on how medical realities changed their physical relationship but ultimately brought them emotionally closer. Time spent together—reading, reminiscing, and watching shows—became a new form of connection. They rediscovered old routines from their early marriage and built a stronger bond through shared trials.
Sylvia also shares how their children, especially their youngest teenage twins and their adult daughter in medical school, responded to the crisis. She notes how her kids matured emotionally, became more empathetic, and stepped up in unexpected ways.
We close with Sylvia offering heartfelt advice to other caregivers: keep showing up, stay grateful, and never forget the power of hope. She reminds us that while this journey is incredibly difficult, it's also filled with unexpected moments of closeness, resilience, and love.
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
00:40 - Introduction to Sylvia Chunn
01:15 - David’s AML Diagnosis and Transplant Decision
02:10 - Living Away from Home for Treatment
03:40 - Navigating Chronic GVHD
05:30 - Caregiver Role and Daily Routine
06:40 - Self-Care and Coping Strategies
08:20 - Mental Health Support for Caregivers
09:40 - Isolation and Infection Risks
11:55 - Impact on Intimacy and Marriage
16:20 - Parenting Through the Crisis
18:40 - Reflections on Family Growth
20:40 - Final Thoughts and Advice to Caregivers
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Welcome to Marrow Masters season 19 with a focus on chronic GVHD. There are so many exciting advances regarding C-G-V-H-D taking place. We'll be talking with a variety of speakers this season, who will share their experiences, advice, coping mechanisms, updates, and tips to make this rare disease more manageable.
We will hear from doctors at the forefront of research and treatment, as well as survivors, caregivers, and advocate-leaders in this space.
Season 19 of Marrow Masters will be out on December 18, 2025.
Thanks to our Season 19 sponsors, Incyte and Sanofi.
https://incyte.com/
https://www.sanofi.com/en
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.
The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.
The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Given that Season 18 of Marrow Masters focuses on caregiving, we wanted to share an empathy exercise that the LINK's licensed staff social worker, Jennifer Gillette, performed in a recent webinar. It's impossible to know exactly what a cancer patient is going through, but through this exercise, you may get a bit of understanding. And it may help you garner some empathy for the person you are caring for.
This season of Marrow Masters is Sponsored by Sanofi and Jazz Pharmaceuticals.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Sally Werner, CEO of Cancer Support Community, to explore her dual perspective as a longtime oncology professional and as a caregiver to her mother-in-law. We begin with Sally’s background—first as an oncology nurse, then a healthcare administrator, and now a nonprofit leader. She calls this her “passion job,” driven by a deep commitment to support patients and caregivers alike.
Sally opens up about her personal journey as a caregiver. Her mother-in-law, Patty Jo, was diagnosed with a rare renal cancer, and Sally became an essential part of her care team, despite living in a different city. As a seasoned professional, she brought clinical experience to the table, but she quickly learned that when the patient is someone you love, emotions can cloud objectivity. To manage this, she utilized Cancer Support Community’s own navigation resources to bring a neutral party into the conversation—someone who could help guide medical decisions without the weight of family emotions.
Second opinions played a crucial role in Patty Jo’s care. Sally emphasized how vital they are, especially with rare cancers. In Patty Jo’s case, an aggressive surgical recommendation was replaced with immunotherapy after a second opinion—an option that ultimately preserved her quality of life and kept her active. The family’s concerns were met with clarity and reassurance, thanks to a coordinated, compassionate care approach.
Caregiver support was another focal point. Sally discusses the emotional and physical toll on her father-in-law, who was the primary at-home caregiver. She stresses the importance of helping caregivers maintain their own wellbeing. Sally even moved in for a time to assist with daily tasks and give him a break, showing how essential family coordination and self-care are during intense medical periods.
We also explore how to activate and manage support systems. Sally used Cancer Support Community’s My Lifeline tool to keep extended family informed and to schedule help in ways that respected Patty Jo’s wishes. This helped avoid overwhelming her while still allowing others to contribute meaningfully.
Throughout the conversation, Sally returns to the theme of shared decision-making. She emphasizes that while friends and family often mean well, it’s the patient who should drive treatment choices. Tools like Open to Options allow patients to articulate values and priorities, helping align treatment with what matters most to them.
We end with a look into survivorship—what it means to live well after diagnosis. For Patty Jo, this means gardening, walking, spending time with family, and learning to manage fatigue. It also means embracing life differently and more deliberately. As Sally reminds us, cancer changes everyone. But with support, compassion, and the right tools, families can find strength and even joy on the other side of diagnosis.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
More:
Cancer Support Community: https://www.cancersupportcommunity.org
My Lifeline Tool: https://www.mylifeline.org
Triage Cancer Financial Resources: https://triagecancer.org
nbmtLINK Finance Guide (English): https://www.nbmtlink.org/product/finance-guide-for-bone-marrow-stem-cell-transplant/
nbmtLINK Finance Guide (Spanish): https://www.nbmtlink.org/product/guia-de-financiacion-para-trasplantes-de-medula-osea-celulas-madre/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk with Deb Brandt, caregiver to her husband, JR, a survivor of Philadelphia-positive acute lymphoblastic leukemia (ALL). Deb shares the journey that began in September 2016 when JR noticed unusual symptoms that led to an urgent diagnosis. Within days, he began an aggressive chemotherapy regimen, with the hope of a bone marrow transplant as the only cure. The search for a match took seven months, eventually expanding internationally until a 10/10 donor was found, leading them to relocate to Stanford University for the procedure.
We discuss the practical realities of caregiving, especially the financial side. Deb emphasizes connecting early with medical teams, social workers, nurse navigators, and financial departments. She details how they tapped into resources from organizations like the Leukemia & Lymphoma Society, utilized a GoFundMe campaign, applied for Social Security disability benefits through its "blue book" criteria, and discovered that many medical bills are negotiable. Deb highlights pharmaceutical assistance programs, including the Medicine Assistance Tool (MAT), NeedyMeds, and Triage Cancer, which help patients access affordable medication.
Deb also shares the importance of proactive communication with insurance providers, especially when facing financial hardship, and leveraging housing support networks such as Ronald McDonald House and Hope Lodge when treatment requires relocation. Don't be afraid to use your personal network, too!
On the emotional side, Deb describes how caregiving is deeply personal, with strategies unique to each person. She and JR found joy in music, storytelling, birdwatching, and creating comforting hospital environments. She underscores the need for caregivers to take their own breaks — whether walks, massages, or naps — and the value of long-term follow-up care, especially when complications like chronic graft-versus-host disease arise.
We explore life after transplant, the strengthening of family bonds, and Deb’s practical lesson of “learning the job” by taking over JR’s household roles. Professionally, Deb works in Montana’s vocational rehabilitation department, helping people with disabilities — including those recovering from cancer — re-enter or adapt to the workforce. She shares that similar resources are available in every U.S. state.
Deb’s closing message is about consciously choosing hope. She encourages caregivers and patients to find daily glimmers of light, allow space for tears, but always return to gratitude and positivity. JR is now eight years post-transplant, living with ongoing health challenges but embodying resilience and determination.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
Check out JR's Survivor Story from Season 14 here: https://marrowmasters.simplecast.com/episodes/jr-brandt
Additional Resources:
Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/
Be The Match – https://bethematch.org
Medicine Assistance Tool (MAT) – https://medicineassistancetool.org
NeedyMeds – https://www.needymeds.org
Triage Cancer – https://triagecancer.org
Ronald McDonald House Charities – https://rmhc.org
Hope Lodge – https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
Vocational Rehabilitation Services Directory – Search “[Your State] vocational rehabilitation”
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Today we sit down with Henry Ford Health Michigan's Hina Desai, an oncology certified social worker with decades of experience, to share her best caregiving tips for those supporting transplant patients. Hina explains that patience, physical stamina, problem-solving, adaptability, and emotional intelligence are essential caregiver skills. We talk about the many roles a caregiver plays — from transportation and medication management to wound care, infection prevention, meal preparation, and emotional support. Staying connected to the healthcare team and keeping friends and family informed are key.
We highlight the value of resources like the Leukemia & Lymphoma Society’s, now Blood Cancer United's, free nutritional consultations. Hina stresses the importance of understanding the Family Medical Leave Act, planning for potential income loss, and connecting with social workers to access financial help from foundations such as LLS, PAN Foundation, Cancer Care, Angels of Hope, New Day Family Foundation, and NMDP.
Hina advises enlisting a support network early. Dividing tasks like grocery shopping, meal prep, transportation, and pharmacy runs helps prevent burnout. She reminds us that transplant caregiving is a marathon — caregivers must look after their physical, emotional, financial, and spiritual wellbeing. This includes setting boundaries, filtering advice, staying flexible, and preparing for setbacks such as relapse or unexpected hospital stays.
We discuss unique considerations for CAR T, allogeneic, and autologous transplants. CAR T caregivers should watch for neurological changes. Allogeneic caregivers may handle tasks like IV magnesium infusions and monitor for graft-versus-host disease (GVHD) or veno-occlusive disease (VOD).
Caregiving can change relationship dynamics, sometimes causing role reversal. Good communication helps maintain mutual respect. Self-care remains vital: nutritious eating, exercise, spiritual practices, adequate sleep, and support groups can all help sustain the caregiver’s energy and emotional health.
Hina and Peggy share heartwarming stories of caregivers going above and beyond, from offering a shower to a hospital-bound spouse, to creatively negotiating with doctors so a patient could return to gardening safely. We reflect on the importance of kindness toward oneself, seeking help when needed, and recognizing that caregiving doesn’t have to be perfect to be deeply meaningful. We also highlight three husbands who have stepped up as caregivers to their wives.
We close with gratitude for caregivers and the countless ways they support recovery, comfort, and hope for transplant patients.
Season 18 of the Marrow Masters podcast is sponsored by Sanofi and Jazz Pharmaceuticals.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
Resources:
Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/
PAN Foundation: https://www.panfoundation.org
Cancer Care: https://www.cancercare.org
Angels of Hope: https://angelsofhope.org
New Day Foundation for Families: https://www.foundationforfamilies.org
National Marrow Donor Program (NMDP): https://bethematch.org
BMT InfoNet: https://www.bmtinfonet.org
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we speak with Daniel Medina of Broomfield, Colorado, about his journey as a caregiver for his wife Miley, who was diagnosed with acute myeloid leukemia (AML) in 2021 at the young age of 27. What begins as a story of sudden diagnosis during an active summer of volleyball quickly turned into an emotional and logistical rollercoaster for Daniel, Miley, and their then two-year-old daughter.
We walk through the early days of Miley’s diagnosis, including a pivotal urgent care visit that led directly to hospitalization. Daniel shares how a professional connection helped secure Miley’s access to top oncological care at UC Health. Despite initial chemotherapy and some success, a relapse in 2022 led to a bone marrow transplant, which ultimately helped Miley recover and thrive. Today, she’s healthier and more driven than ever—running three coffee shops, parenting energetically, and even making time for beach volleyball.
Throughout the conversation, we dive deep into Daniel’s experience as a male caregiver. He reflects on the challenges of holding together family life, work obligations, and emotional well-being while supporting a critically ill spouse. He shares how difficult it was to ask for help—something that went against his natural instinct for independence—and how family, colleagues, and mindfulness practices helped him cope.
Daniel is candid about the helplessness he felt, the fears of losing his partner, and the emotional weight of trying to appear strong for his daughter. He explains how something as small as being physically present, even if it’s just sitting silently in the hospital room, becomes powerful. We also learn how critical digital communities like the CancerBuddy app were in helping him find hope, practical advice, and emotional connection during a time when Google only offered grim statistics.
We explore how Miley’s recovery affected not only their family dynamics but also their daughter, who—despite her young age—continues to carry emotional echoes of the experience. Daniel highlights the importance of honoring milestones and using them to reflect on growth, healing, and gratitude. He encourages all caregivers to stay grounded, stay present, and reach out for support when needed. His perspective is not only honest and raw, but also deeply human, offering valuable insight into the caregiving journey from a role that’s often underrepresented.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
CancerBuddy: https://bonemarrow.org/support-and-financial-aid/support/about-cancerbuddy
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Lorri Pimentel of Santa Rosa, California, a resilient survivor who shares her deeply personal journey through breast cancer, acute myeloid leukemia (AML), and a life-saving bone marrow transplant. We explore not only the medical milestones but also the practical and emotional realities of navigating treatment and recovery, especially in the context of caregiving during the COVID-19 pandemic.
Lorri opens by walking us through her diagnosis timeline: first with DCIS breast cancer in 2016, followed by an AML diagnosis in 2019. She underwent intense chemotherapy and, after a relapse, received a stem cell transplant in March 2021. Her story is not only one of medical complexity but also of personal upheaval—she was in the middle of a divorce and raising three children, with limited family caregiving options. Her caregivers were her friends and former work colleagues, who rotated week by week to support her recovery.
We dive into Lorri’s insights and hard-earned lessons about caregiving and post-transplant life. She stresses the importance of flexibility in caregiver scheduling, being prepared for early hospital discharge, and having a list of essential medical contacts readily available. She advises caregivers to undergo thorough training, keep detailed records for outpatient visits, and maintain strict medication management practices.
Lorri doesn't shy away from sharing her missteps. She discusses her experience with Graft-versus-Host Disease (GvHD), the dangers of sun exposure, and complications like mucositis and insomnia. Her tips—like using a water pick, prescription mouthwash, fluoride toothpaste, and avoiding self-medicating with cannabis—are based on lived experience. She also shares less obvious insights, such as the need for UV-protective clothing, avoiding rice leftovers, and managing dry eyes with serum-based drops not yet FDA-approved.
Transportation and social isolation were also major themes. Lorri emphasizes the importance of arranging reliable rides to appointments and finding indoor outlets for creativity and community. She found healing in watercolor art, music, yoga, and support groups. Her volunteer work with LLS, now Blood Cancer United, and NMDP reflects her dedication to mentoring others on the same path.
We wrap up by discussing Lorri’s present-day life. Now more than four years post-transplant, she’s active, creative, and grounded in gratitude. Her final message is one of hope and purpose: bone marrow transplant recovery is slow, but it’s life-changing, and each day is a gift worth sharing.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Anastasia Cacavias, a registered nurse and manager of the Blood and Marrow Transplant Leukemia Program at Northside Hospital Cancer Institute in Atlanta. Anastasia walks us through the essential role that caregivers play throughout the transplant journey—from initial diagnosis to long-term recovery. Her perspective comes not only from clinical experience but from deeply personal connections with patients and their support systems.
We begin by discussing the broad and intensive responsibilities caregivers take on. These range from medication management, symptom monitoring, transportation, and attending every medical appointment to providing emotional support 24/7. Anastasia explains how caregivers are not just passive companions but active partners in medical care. They’re educated thoroughly before the patient begins their conditioning regimen, especially about signs of infection, graft-versus-host disease, and other complications.
Once patients return home, the caregiver’s role intensifies. They’re responsible for maintaining a clean home environment, food preparation, hygiene assistance, and ensuring infection control—such as hand washing, mask-wearing, and visitor limitations. Anastasia offers guidance on how caregivers can prepare, including maintaining good communication, staying organized, and using a detailed education notebook provided by the hospital.
Self-care for caregivers is a major focus. Anastasia emphasizes that it’s okay to admit feeling overwhelmed. She encourages them to take breaks, get proper rest, eat well, and tap into family or community resources for support. Even small actions, like letting someone else bring the patient to the clinic for a few hours, can be meaningful.
We also explore more medical territory—highlighting key patient needs such as hydration, nutrition, and mobility. Physical therapy is introduced before transplant and continued after, with an emphasis on realistic daily movement goals. Proper dental care, both pre- and post-transplant, is essential to avoid complications, with tips like using alcohol-free mouthwash and soft-bristled brushes.
We touch on important transplant-related complications such as Graft-versus-Host Disease (GvHD) and Veno-Occlusive Disease (VOD). Anastasia details the signs to watch for, treatment protocols, and the hospital's proactive approach, including assigning dedicated GvHD nurses and maintaining 24/7 communication lines for urgent symptoms.
Anastasia closes the conversation with moving stories of caregivers who went above and beyond—reminding us of the emotional strength and love that often fuels this journey. These stories reinforce her message: caregivers are central to healing. Without them, recovery would look very different.
Northside Hospital: https://www.northside.com/
National Marrow Donor Program (NMDP): https://bethematch.org
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Welcome to Season 18 of Marrow Masters, produced for the National Bone Marrow Transplant Link, and sponsored by Sanofi and Jazz Pharmaceuticals. This season is all about the caregivers. Our guests will offer up their best tips, experiences and advice. We’ll cover the importance of self-care and share heartwarming stories of compassion and love.
You'll hear from an RN and transplant manager at Atlanta's Northside Hospital, a CEO of a cancer organization who found herself in the cargiver role, an oncology social worker, a survivor who had an army of caregivers, and a male and female caregiver. You'll want to hear how those roles affected the dynamics of their relationships.
This season, we're also including an empathy exercise- demonstrated by the National Bone Marrow Transplant LINK's own social worker, Jennifer Gillette. While most of us are fortunate not to know first-hand what it's like to have cancer, this exercise will open your eyes to what your loved one may be experiencing.
Please share this podcast with someone you think would benefit from it. And don’t miss future episodes of our show – follow Marrow Masters for free on Apple, Spotify, YouTube, or wherever you’re listening right now. Marrow Masters is produced for the National Bone Marrow Transplant Link. Established in 1992, the LINK strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship. The Marrow Masters podcast is produced by JAG Podcast productions, online at JAGPodcastProductions.com.
This season is sponsored by Sanofi: https://www.sanofi.com/
And Jazz Pharmaceuticals: https://www.jazzpharma.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this incredible episode of Marrow Masters, we sit down with Kayla West, a stem cell donor from Texas, and Miriam Bauer, the mother of a young leukemia survivor Miley, from Oklahoma. This story is a deeply emotional journey of hope, resilience, and a connection that transcends bloodlines. Kayla and Miriam take us through the entire transplant process from both perspectives: the donor stepping up during a pandemic, and the caregiver navigating a life-threatening diagnosis in a child.
We begin with Kayla’s decision to join the donor registry after a chance encounter with DKMS at a Goo Goo Dolls concert. She didn’t expect to be called to donate, but when she was, during COVID lockdown, she jumped at the chance to help someone—anyone—in need. That “anyone” turned out to be Miley, an eleven-year-old girl who had been diagnosed with acute myeloid leukemia (AML) and urgently needed a transplant after two brutal rounds of chemotherapy.
Miriam recounts those terrifying early days at St. Jude, from the moment of diagnosis through the chaos of the early pandemic lockdowns. She was Miley’s only caregiver during a 248-day hospital stay. Her story is filled with moments of heartbreak and triumph, from failed chemo rounds to the joy of reaching remission and finding a viable donor in Kayla. We learn how transplant coordination works, how donor cells were frozen and shipped during COVID, and how little details—like celebrating donor day or choosing a transplant date that coincides with family birthdays—brought joy in dark times.
Post-transplant, Miley’s life has been a mix of recovery and lingering health effects, but she's thriving. Miriam emphasizes advocacy, honesty, and self-care for caregivers. Kayla, for her part, reflects on the overwhelming emotion of learning she was a match, undergoing all the testing during COVID, and then finally meeting the recipient of her cells in an unforgettable reunion in New York. The two families, now bonded for life, meet regularly and have built a deep friendship. Next up: A trip for Kayla's family to Oklahoma to experience a powwow with Miriam, Miley, and their family!
The videos below will have you reaching for the tissues and hopefully inspire many to get swabbed.
Kayla also shares her decision to launch a nonprofit, SETX Leukemia Organization, focused on educating communities and recruiting new donors. Her goal is to prevent other families from facing what Miriam’s did—wondering if there will be a match in time. Kayla’s drive, born from her experience, continues to ripple outwards as she recruits more potential donors at local events with DKMS support.
This episode isn’t just about survival—it’s about connection, purpose, and what can happen when strangers become family through an act of extraordinary generosity.
SETX Leukemia Organization (Kayla’s nonprofit): https://setxleukemia.org/
DKMS (Be The Match partner organization): https://www.dkms.org
DKMS Video about Kayla, Miley, and Miriam: https://www.youtube.com/watch?v=sNhwRxXMbw8
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Nick Giallourakis, Executive Director of the Steven G. Cancer Foundation and co-founder of Elephants and Tea, a digital magazine and support platform for adolescent and young adult (AYA) cancer patients and survivors. We begin by learning about Nick’s brother, Steve, whose incredible journey as a five-time cancer survivor—including osteosarcoma, Secondary AML, renal cell carcinoma, and pleomorphic sarcoma—serves as the foundation and inspiration for Nick’s work.
Nick walks us through the origins of Elephants and Tea, which he co-founded with his mother, Angie. The platform emerged from a need for authentic, uncensored storytelling within the AYA cancer space. They pivoted from a traditional media model to a platform where survivors share their stories in their own words. This decision came from listening to survivors who didn’t want their experiences diluted. The magazine’s name—suggested through a contest—symbolizes the raw truth of cancer as the “elephant in the room,” while “tea” represents the comfort found in open dialogue.
Nick highlights key challenges AYAs face: financial toxicity, unstable careers, insurance struggles, dating, and misdiagnoses due to age biases. He’s encouraged by the growing trend of self-advocacy in this group, including the rise in second opinions. We reflect on the post-COVID landscape, noting how virtual platforms opened doors for more isolated individuals, while in-person connections remain essential for others.
We touch on caregiving—especially for AYAs where roles can be filled by peers, not just parents. Nick emphasizes the importance of caregivers asking for help and delegating tasks. He also speaks candidly about the emotional toll of losing community members and the need to acknowledge and process that grief.
We explore how storytelling fuels community-building at Elephants and Tea. The magazine has contributors from 15 countries, highlighting a global hunger for connection and support. Nick shares how partnerships—like their impactful collaboration with Walgreens—are making tangible changes, such as mandatory fertility counseling for patients receiving chemo for the first time. Behind the scenes, they're working with industry and medical organizations to use these stories for systemic change.
As for what’s next, Elephants and Tea continues to expand its in-person programming, including regional magazine release events. They're consistently surveying their audience to ensure their efforts are aligned with current needs. Nick leaves us with a heartfelt story of a late community member who, through a simple virtual Halloween hangout, helped spark deeper bonds and outreach across the cancer community.
More:
Elephants and Tea: https://elephantsandtea.com
Steven G. AYA Cancer Research Fund: https://stevengcancerfoundation.org
Cancer and Fertility Magazine produced by Elephants and Tea WITH Walgreens: https://elephantsandtea.org/cancer-fertility/
YA Cancer Gabfest (Cactus Cancer Society): https://cactuscancer.org/ya-cancer-gabfest
Stupid Cancer: https://stupidcancer.org/
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we speak with Emily Long Sarro, a board-certified family nurse practitioner specializing in adolescent and young adult (AYA) care at Memorial Sloan Kettering Cancer Center. We focus on the unique challenges AYAs face before, during, and after a stem cell transplant. Emily shares how this age group, defined as 15 years old to 39 years old by the National Cancer Institute, is often overlooked in the healthcare system, stuck between pediatric and adult care settings. They’re navigating identity, relationships, careers, and independence—while also managing a serious illness, which can disrupt or halt life milestones.
We discuss how Emily approaches AYA care with a holistic mindset—merging clinical treatment with emotional and mental health support. She emphasizes the importance of granting young patients autonomy and private space, especially when families may unintentionally overstep. She urges healthcare providers to always include mental health support in the treatment plan, noting that anxiety, depression, and even PTSD are common in this group, both during and long after treatment.
Emily also stresses the need for daily coping tools like journaling, movement, and meditation to supplement infrequent counseling sessions. She encourages us to create trust by really listening, especially since many AYAs feel dismissed in early diagnostic stages due to their age.
We then dive into critical but often unspoken topics: fertility preservation, sexual health, and survivorship. Emily outlines time-sensitive fertility options and highlights the emotional toll if these aren’t addressed early. She covers the hidden costs of care and offers resource suggestions like Livestrong and Cancer and Careers. She also calls attention to "silent disabilities" that persist post-transplant and affect career and daily function, emphasizing self-advocacy in the workplace. Coworkers and others may not "see" these limitations, but accommodations are often necessary.
We discuss milestones missed due to treatment and the emotional weight of watching peers move on through social media. Emily suggests practical ways to stay socially connected, such as virtual events and platforms like Cancer Buddy. For caregivers, she reminds us that support often means just being present and handling small tasks that feel overwhelming to the patient. It's important to hold space for patients' sadness over missing milestones, but when appropriate, the big picture remains: they may be sacrificing a few milestones now to experience many more later.
The episode closes with a deeply moving survivor story—a young man from The Bronx who overcame mistrust in the medical system, underwent a transplant, and now runs a thriving music production business. His resilience and transformation encapsulate the hope and strength that defines this patient group.
More:
Marrow Masters Season 9, Episode 2, with fertility resources in Show Notes: https://marrowmasters.simplecast.com/episodes/preserving-fertility-through-cancer-treatment
CancerCare – https://www.cancercare.org
Imerman’s Angels – https://imermanangels.org
Livestrong Fertility – https://livestrong.org/how-we-help/livestrong-fertility/
Worth the Wait – https://worththewaitcharity.com/
Maggie’s Dream (Fertility Preservation Assistance)–https://www.teammaggiesdream.org/
Cancer and Careers – https://www.cancerandcareers.org
Cancer Buddy App (Bone Marrow Foundation) –https://bonemarrow.org/support-and-financial-aid-2/support/about-cancerbuddy
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Dr. Chris Dandoy, Associate Professor of Clinical Pediatrics and bone marrow transplant physician at Cincinnati Children’s Hospital. Dr. Dandoy shares his deep experience working with adolescents and young adults (AYAs), focusing on the unique challenges they face during and after cancer treatment. Our conversation centers around empowering AYAs to take ownership of their healthcare journey, improving outcomes, and restoring quality of life.
Dr. Dandoy introduces us to Engraft, a collaborative learning network he founded, which unites providers, patients, families, industry partners, and nonprofits to improve survival and quality of life post-stem cell transplant. Rather than each center working in isolation, Engraft allows for real-time communication and problem-solving across 15 centers, helping everyone learn from each other’s best practices.
A core message in our conversation is the importance of ownership—encouraging AYAs to ask questions, understand their medications, and advocate for themselves. We explore the concept of “ownership” through examples, like advocating for the removal of central lines after they’re no longer medically necessary, and understanding the role and risks of medications such as immunosuppressants and anti-infectives.
Dr. Dandoy walks us through strategies to support medication adherence, such as using reminder apps, setting daily routines, and involving friends or caregivers for support. He also emphasizes the temporary nature of this intense medication schedule, helping patients see it as a phase, not a life sentence.
We highlight how important it is for AYAs to stay engaged—learning about their labs, asking what new medications are for, and writing down questions for their healthcare team. Chris stresses that they don’t have to memorize everything; the goal is communication and awareness, not perfection.
For caregivers, Chris offers validation and encouragement, reminding them this is a marathon with tough stretches, but also moments of progress. He urges caregivers to walk beside their loved ones—not behind or in front—fostering independence and shared decision-making.
Dr. Dandoy closes with an inspiring story of a young survivor who endured ICU-level complications but is now back to running races and embracing life fully. It’s a powerful reminder that while the transplant journey is grueling, it’s also transformative.
More:
Engraft Learning Network: https://www.engraftlearningnetwork.org/
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
This episode of Marrow Masters brings us an incredible conversation with Kitrena Young, a two-time cancer survivor whose story spans decades and highlights the unique challenges faced by adolescents and young adults (AYAs). We begin by learning about Kitrena’s initial diagnosis of B-cell ALL with a Philadelphia chromosome at the age of eight, followed by a shocking relapse 23 years later. Her candor about how she recognized the early signs the second time around—bruising and fatigue—underscores the importance of self-awareness and advocacy.
We discuss how navigating the adult healthcare system differed drastically from her pediatric experience. Kitrena takes us through her rapid efforts to get an urgent appointment and the emotional toll of being thrust back into the cancer world. With support from her brother and eventually finding care at the Memorial Sloan Kettering Cancer Center (MSKCC) through a compassionate voice on the phone, she exemplifies what it means to be proactive in your care journey.
Fertility preservation is another focal point. Kitrena recounts her decision to freeze 15 eggs before starting treatment and how her perspective on parenthood has evolved. She walks us through the emotional and physical realities of exploring surrogacy and genetic testing post-transplant—particularly the complex issue of donor DNA requiring a skin biopsy for viable results.
Kitrena doesn’t shy away from discussing post-treatment life: weight gain linked to early menopause, a challenging international trip filled with setbacks and triumphs, and the frustrations of altered tastes and capabilities. Despite it all, she maintains a remarkable sense of humor and determination to continue traveling and living fully.
Family and caregiver dynamics are woven throughout her story. She speaks lovingly about her partner’s unwavering support and the strength of her younger brother, who stepped up when needed most. Her message to caregivers includes practical advice—especially around vigilance with medical billing, noting errors she encountered from appointments she never attended.
Finally, Kitrena emphasizes the growing importance of therapy for both patients and caregivers. She encourages the AYA community to use available resources to work through trauma, grief, and uncertainty—pointing to virtual options that didn’t exist in her earlier experience.
Kitrena's journey is one of persistence, clarity, and empowerment. She brings vital, firsthand wisdom to the AYA cancer space, reminding us that while every survivor's path is different, no one should walk it alone.
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
FInancial Resource from the LINK: https://www.nbmtlink.org/financebookresources/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk with David Hartley, PhD, MPH, who shares his deeply personal experience as both a caregiver and a scientist. David is chair of the board for Engraft, a learning network focused on improving outcomes in transplant and cellular therapy through collaboration and shared data. While he brings professional expertise in infectious diseases and epidemiology, our conversation centers on his journey as a father navigating his son Devin's stem cell transplant at age 13.
We begin by discussing Devin’s sudden diagnosis after months of unexplained symptoms. Despite initial medical dismissal, David’s persistence—fueled by his medical background—led to a hematologist visit that quickly changed everything. From that point, their lives became dominated by a rapid series of decisions leading to a bone marrow transplant at a center hours from home. With a second child, sick parent, and full-time jobs, David and his wife adopted a "divide and conquer" strategy: she managed Devin’s care in-hospital, while he held down things at home.
Throughout, David stresses the overwhelming nature of transplant. It’s relentless and multifaceted—emotionally, logistically, and financially. His wife tracked medications, schedules, and insurance battles. One notable success was avoiding a lawsuit thanks to her meticulous record-keeping and strong communication with their insurance provider. David’s role included managing home infusions and learning as much as possible about the transplant process to mitigate risks, particularly infections. They juggled roles and adapted constantly, ensuring redundancy in caregiving in case one of them became unavailable.
We delve into the emotional toll and the universality of caregiver fatigue. David admits to not managing his own stress well, noting long-term impacts. He discusses a study linking chronic stress to telomere shortening (he explains what that is- see below for the link), highlighting the physical consequences of caregiver strain. Still, he emphasizes the importance of accepting help and finding moments for self-care, however small.
David shares powerful insights on advocacy, highlighting it as a team effort rather than a confrontation. He and his wife advocated for Devin’s pain management, educational access, and protection from medical errors. He stresses the value of caregivers’ unique skills and the importance of focusing on the outcomes that matter most to each family—whether clinical or social.
Later in the episode, David offers a scientist’s perspective on the variability in patient outcomes and the limitations of statistics in predicting individual experiences. His reflections underscore the complexity of transplant medicine and the value of shared data systems like Engraft. He also reminds us not to panic over single research findings, advocating for a balanced, critical view of medical literature.
We close with the good news: Devin is now a healthy, wise young adult. David expresses deep gratitude to the care teams and support networks that helped them through. His story is a testament to resilience, collaboration, and the essential role of caregivers in the transplant journey.
Engraft: www.engraftlearningnetwork.org
Triage Cancer: https://triagecancer.org
AARP article about Telomore: https://www.aarp.org/health/conditions-treatments/elizabeth-blackburn-stress-dna-hd/
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In our 17th season of the Marrow Masters podcast, we will be focusing on Adolescents and Young Adults, collectively known as AYAs. Defined as between the ages of 15 and 39 by the National Cancer Institute, these patients have a unique cancer journey. They are often too old for pediatric clinics, but feel out of place among older adults in a tradtional oncology department.
This season we will talk to survivors, social workers, caregivers, and doctors. And you won't want to miss a conversation between two moms who have become family - when one made a life saving donation to the other's daughter.
Thanks to our Season 17 Sponsors:
Leukemia and Lymphoma Society (LLS): https://lls.org/
and Incyte: https://incyte.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we welcome Jeannie Wiarda, LMSW, a Medical Social Worker at the Adult Blood and Bone Marrow Transplant Center at Corewell Health in Grand Rapids, Michigan. Jeannie has been a Medical Social Worker at Corewell Health for 20 years including 14 years in Hospice and Palliative Care Inpatient; time in the Emergency Room prior to that, and has currently spent three years in bone marrow transplant. Jeannie provides insight into her work with transplant patients, particularly those navigating chronic graft-versus-host disease (GVHD), offering a comprehensive view of her role and strategies for supporting survivors through their journeys.
Jeannie explains that her role as a social worker encompasses the entire transplant process—from the pre-transplant evaluation to post-transplant care. She helps patients address barriers like financial challenges, housing, and psychological trauma, tailoring support to each individual’s unique needs. Her involvement extends through the hospital stay and into recovery, offering continuity of care during this vulnerable time.
A key theme is the interplay between stress, trauma, and the transplant experience. Jeannie highlights the impact of chronic stress on the brain, emphasizing the importance of caregivers who provide practical and emotional support. She underscores the necessity of self-care for caregivers, advocating for planned respite and support systems to sustain their well-being.
Jeannie shares actionable strategies for patients and caregivers to find hope and purpose amid the challenges of GVHD. These include maintaining a healthy lifestyle, engaging in fulfilling activities, and staying connected with others. She stresses the value of education, encouraging patients to leverage resources like the nbmtLINK, BMT InfoNet, LLS, and the GVHD Alliance to empower themselves with knowledge and advocacy skills.
Jeannie emphasizes finding ways to “live life” despite the limitations GVHD may impose. She recalls stories of patients adapting activities to their current abilities, referencing another podcast by the LINK where we talked to a survivor who switched to an e-bike for outdoor exploration. Jeannie also advocates for fostering connections through support groups and meaningful activities, such as volunteering, to regain a sense of purpose.
Jeannie concludes with advice on processing grief and fear, embracing compassion, and accessing professional mental health resources, including cognitive behavioral therapy such as Eye Movement Desensitization and Reprocessing (EMDR), for addressing trauma. Her compassionate, holistic approach demonstrates the profound impact of social work in transforming survivorship into a journey of resilience and empowerment.
More:
- GVHD Alliance: https://www.gvhdalliance.org
- Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
- Book: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748
- Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Sarah Bugen, a nurse at Memorial Sloan Kettering Cancer Center, who shares her expertise on managing life after a blood or bone marrow transplant, particularly in relation to chronic graft-versus-host disease (GVHD). The conversation centers on practical advice for patients and caregivers navigating recovery and maintaining quality of life.
Regarding Oral GVHD, Sarah emphasizes the importance of oral health post-transplant, recommending soft toothbrushes, alcohol-free mouthwash, and avoiding irritants like spicy or acidic foods. She suggests soft, hydrating foods and stresses the need for regular dental checkups with oncologist approval. Hydration is vital for managing dry mouth, with a goal of 2-3 liters of fluids daily. Also, sugarless candy or gum can help stimulate saliva production.
For nutrition, Sarah advises increasing caloric intake with protein powders, full-fat products, and small, frequent meals. She also highlights the value of bland diets and electrolyte packets for hydration. Avoiding triggers like dairy, caffeine, and greasy foods can minimize gastrointestinal discomfort (and even GVHD of the GI Tract), while clean cooking practices ensure safety during recovery.
Skin care is another focus. Sarah recommends fragrance-free, gentle products like CeraVe and Cetaphil and suggests applying moisturizer after a shower to lock in hydration. Sunscreen, protective clothing, and sun hats are essential, even in winter, to protect sensitive post-transplant skin.
Physical activity is vital for rebuilding strength and improving mental health. Sarah advises patients to start slow with light activities like walking or stretching and gradually increase as tolerated. Physical therapy exercises should be integrated into daily routines, and adequate rest is crucial after any activity. Even though it may be counter-intuitive, continuous movement is key in the battle against fatigue.
Caregivers also play a pivotal role. Sarah underscores the importance of open communication with the medical team and notes that caregivers can support medication management, track progress, and join support groups for additional resources. Caregivers are encouraged to celebrate small victories and take care of their own mental health, as they are an essential part of the recovery process.
Finally, Sarah shares an incredible survivor story, and reflects on the resilience in her patients and the importance of celebrating milestones like “transplant birthdays.” She encourages patients to set realistic goals, maintain hope, and focus on incremental progress. Sarah leaves us with an inspiring reminder to be patient with ourselves, celebrate every achievement, and never stop fighting.
Resources:
Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
GVHD Alliance: https://www.gvhdalliance.org
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we meet up with Josh Conklin, a seasoned bone marrow transplant (BMT) nurse at the University of Michigan Hospital, to explore his experiences, insights, and tips for managing chronic graft-versus-host disease (GVHD). With 11 years of inpatient experience, Josh offers a comprehensive view of the challenges and triumphs in caring for patients undergoing BMT.
Josh explains that his primary role involves guiding patients through the most critical stages of their transplant journey, from chemotherapy conditioning to the stem cell infusion and the vulnerable recovery period afterward. He emphasizes the delicate balance required in managing GVHD, a condition that plays a dual role: while some GvHD is beneficial in suppressing cancer recurrence (graft-versus-leukemia effect), too much can lead to severe complications.
Long-term immunosuppression is a cornerstone of GVHD management. Josh highlights the reliance on drugs like tacrolimus and, when necessary, steroids. However, we note the adverse effects of prolonged steroid use, such as muscle wasting, infections, and physical deconditioning. Emerging monoclonal antibody therapies are offering new hope, aiming to reduce these side effects.
The discussion also sheds light on the psychological toll of repeated hospitalizations and the role caregivers play in patient success. Josh describes caregivers as essential for monitoring symptoms, administering medications, and providing emotional support. However, he acknowledges the significant strain caregiving can impose, especially during the critical first 100 days post-transplant when patients are highly vulnerable.
Josh shares stories of resilience and purpose among his patients, underscoring the importance of a positive outlook and having something meaningful to strive for. He reflects on the impact of a strong support system, whether it’s family, friends, or peer mentorship programs, in helping patients navigate their “new normal.” Despite the challenges, Josh finds inspiration in his patients' ability to find joy and purpose, even in difficult circumstances. He shares his experience with one woman in particular.
This heartfelt conversation highlights the physical, emotional, and relational dynamics of BMT care, offering a glimpse into the profound impact of dedicated healthcare professionals like Josh.
More:
- GVHD Alliance: https://www.gvhdalliance.org
- Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
- Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk to Carly Cappozzo, a senior occupational therapist specializing in graft-versus-host disease (GVHD) rehabilitation at a major cancer hospital. Carly shares her unique approach to patient care, emphasizing the importance of holistic and personalized therapy that empowers patients to regain their independence and identity post-treatment.
Carly explains her role as an occupational therapist, detailing how she helps patients achieve independence in everyday tasks and rediscover activities that give their lives meaning. Her methods include activity analysis, breaking down tasks to identify barriers, and creating strategies to overcome them. She highlights the need for patient-centered care, ensuring therapy aligns with each individual’s goals and preferences.
Carly discusses her work in GVHD rehabilitation, particularly focusing on the relationship between skin, fascia, muscle tightness, and the nervous system. She underscores the value of gentle, prolonged stretching and calming the nervous system to improve mobility and reduce stress. She also addresses cancer-related fatigue, comparing it to a depleted energy "bank account," and stresses the importance of prioritizing activities that bring joy while conserving energy for essential tasks.
Practical solutions for ocular GVHD are explored, including leveraging technology’s accessibility features like text magnification and screen readers. Carly advises tailoring daily routines to maximize engagement in meaningful activities and adapting tasks to accommodate physical limitations. She highlights the importance of movement over exercise, recommending gentle, natural activity to improve well-being.
Carly emphasizes the critical role of caregivers in fostering patient independence. She advises caregivers to balance support with opportunities for patients to contribute to daily life, thus maintaining a sense of purpose. Carly also shares inspiring stories of patients overcoming significant physical and emotional challenges through therapy, demonstrating resilience and achieving a fulfilling quality of life.
The conversation concludes with advice for survivors and caregivers to approach GVHD recovery as a marathon rather than a sprint, emphasizing patience, consistency, and a collaborative approach to health and wellness.
More:
- Seeing AI App: https://www.microsoft.com/en-us/ai/seeing-ai
- GVHD Alliance: https://www.gvhdalliance.org
- Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
- Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In today’s episode, we talk with Krista Wood, a registered nurse with the Cell Therapy and Transplant Program at Victoria General Hospital in Halifax, Nova Scotia (Canada). Krista shares her invaluable insights and experiences working with patients dealing with chronic graft-versus-host disease (GVHD), a common complication following stem cell transplants. Our discussion delves into the importance of communication, post-transplant care, and finding joy and purpose during survivorship.
Krista emphasizes that early detection and treatment of GVHD are critical. She encourages patients to report any changes, no matter how minor they may seem, and reassures them that healthcare teams are there to help. This open communication is vital, as post-transplant life can be overwhelming with fears of relapse or complications. Ensuring patients have direct access to their care team can ease their anxieties and foster trust.
Routine health checks, like blood work and pulmonary function tests, play a crucial role in monitoring potential complications. Krista explains the importance of tracking liver enzymes, bone density, and lung function to catch and address issues early. She underscores that post-transplant care goes beyond the transplant itself, extending to overall health maintenance, including routine screenings like mammograms, dental care, and colorectal exams.
Reconnecting with life post-transplant is another important theme. Krista encourages patients to rediscover the activities they loved before their illness, whether it’s returning to work, volunteering, or pursuing hobbies. Work and social engagement provide purpose and can aid emotional recovery. For those who can’t return to work, finding alternative ways to contribute, such as volunteering with organizations like the Leukemia & Lymphoma Society or HealthTree, can offer fulfillment and connection. (Note: the National Bone Marrow Transplant Link (nbmtLINK) has a peer mentor program as well, email info@nbmtlink.org if you'd like to be a peer or need a peer mentor. )
Preparing for transplant and understanding GVHD beforehand is crucial. While some patients prefer to know everything, others may only want the basics. Krista and her team provide consistent education in manageable increments to help patients absorb key information. She explains factors that increase the risk of GVHD, such as donor characteristics and patient preconditioning, and stresses the importance of entering the transplant process in the best possible physical shape.
Krista also highlights the importance of addressing sensitive topics like sexual health, which many patients are reluctant to discuss. She brings up these issues proactively, ensuring patients feel supported and have access to necessary resources.
Finally, Krista shares stories of hope, including patients who, despite long-term challenges, have regained a sense of normalcy and fulfillment. She reminds us that while every patient’s journey is unique, resilience and adaptation are common threads in their recovery.
This episode is a testament to the critical role nurses like Krista play in guiding patients through this complex medical journey, offering care, education, and encouragement every step of the way.
More:
- Leukemia & Lymphoma Society: https://www.lls.org
- HealthTree Foundation: https://www.healthtree.org
- GVHD Alliance: https://www.gvhdalliance.org
- Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
- Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we sit down with Lisa Stewart, a nurse practitioner with more than 25 years of transplant nursing experience, currently working at the post-transplant BMT clinic at the Dana-Farber Brigham Cancer Center in Boston. Lisa provides invaluable insights into managing chronic and acute graft-versus-host disease (GVHD) and shares her expertise, stories, and advice for patients and caregivers navigating post-transplant life.
Lisa describes her role in outpatient care, where the majority of her work focuses on managing chronic GVHD, a condition that is both a sign of a functioning immune system and a complex challenge. While mild GVHD can indicate that the transplant is effectively fighting diseases like leukemia or lymphoma, severe cases can lead to complications involving multiple organs. Lisa outlines the two major categories of GVHD: steroid-reactive and steroid-refractory, with the latter being particularly difficult to treat. Acute GVHD typically occurs within the first 100 days post-transplant and often impacts the skin, liver, or gut, whereas chronic GVHD can develop months or years later and affect a broader range of organs, including the eyes, mouth, lungs, and reproductive systems.
Clinical trials have led to significant advancements in treatment, including drugs like Ruxolitinib and Rezurock, offering hope to patients who fail first-line steroid therapy. Lisa also highlights Axatilimab, a newer medication discussed at the 2023 ASH meeting, although its availability remains limited due to manufacturing challenges. Despite these breakthroughs, steroids remain the frontline treatment, though they often cause challenging side effects like hyperglycemia, insomnia, and weight gain.
Lisa also emphasizes the critical role caregivers play in a patient’s recovery, managing complex medication regimens and providing vital emotional and physical support. She notes that without strong support at home, a transplant may not be feasible, particularly in the crucial first six months post-transplant.
The episode also touches on common post-transplant issues like oral GVHD, fatigue, and the importance of staying active. Lisa shares practical tips, such as using Dexamethasone rinses for oral GVHD and encouraging light activity to combat fatigue. She underscores the importance of early symptom reporting, especially for chronic GVHD, as prompt intervention can significantly improve outcomes.
Lisa concludes with a heartfelt story of a young patient who faced severe complications, including acute respiratory failure and paralysis, but ultimately made a remarkable recovery, even regaining mobility and starting a family. Stories like his, Lisa says, are what keep healthcare providers inspired despite the challenges.
We wrap up with a reminder about the resources available to patients and caregivers, encouraging early reporting of symptoms and proactive management. Lisa’s wisdom and dedication shine through, offering hope and practical guidance for those navigating the complex world of post-transplant care.
More:
- GVHD Alliance: https://www.gvhdalliance.org
- Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
- Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Season 16 of Marrow Masters, Sponsored by Sanofi, will be released January 30, 2025. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship. Season 16 of our show will focus on the best tips for dealing with Chronic GVHD. Top notch health care professionals will share their compassion, best advice, insight and caregiving tips regarding chronic GVHD. This season will offer education, tried and true solutions, stories of hope and more.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode of Marrow Masters, we hear the journey of married couple Dave and Laurie Brock, as they share their experience with CAR T-cell therapy— one Dave very recently underwent. The Brocks provide an inspiring and honest account of navigating this complex treatment process. Dave, diagnosed with multiple myeloma in 2015, had an eight-year remission following a stem cell transplant. When he relapsed earlier this year, his doctor, Dr. Abdullah at the University of Kansas Medical Center, recommended CAR T-cell therapy, which had just been FDA-approved for patients in his position. Dave recalls his surprise that what once felt like a “futuristic” option was now available and could be pursued immediately.
As Dave began CAR T- cell therapy, he leaned on advice he received early in his treatment: maintain a positive attitude, be informed, and work closely with his healthcare team. Physical fitness played a crucial role in his journey, allowing him to hike and stay active, which he believes aided his recovery. However, the therapy wasn’t without challenges. He experienced significant fatigue, developed Bell's palsy as a side effect, and had to constantly monitor for signs of neurotoxicity.
Laurie is Dave's "care partner," not "care giver." And she describes the intensive nature of navigating CAR T- cell therapy. She monitored Dave around the clock, prepared their home with stringent health protocols, and managed the complexities of his medication and appointments. Laurie’s commitment required self-sacrifice; she isolated from family and even stopped going to the gym to protect Dave from exposure to illness. However, she also found unexpected joy in the time spent alone with Dave, as they grew closer through shared activities and humor.
Both Dave and Laurie emphasize gratitude—appreciating their medical team, the support of their community, and the positive outcomes of CAR T-cell therapy. Their care team was deeply invested in their success, with doctors even celebrating with them on day 31 when test results confirmed Dave was in remission. Dave reflects on how fortunate he feels for his proximity to the clinic and his medical staff’s expertise, acknowledging the importance of clinical trials and the contributions of previous patients in advancing treatments like CAR T.
The episode closes with Dave’s reminder: we’re all in this together, underscoring the value of community, support systems, and the role that clinical trials play in the ongoing advancements in cancer treatment. He also shares his gratitude for anyone who's participated in a clinical trial. Without them, he wouldn't have had the opportunity to undergo this cutting-edge treatment.
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this interview, we sit down with Dr. Hemant Murthy, a professor of medicine in the division of Hematology/Oncology at Mayo Clinic, to explore the groundbreaking potential of CAR T-cell therapy and the crucial role clinical trials play in advancing cancer treatments.
Dr. Murthy begins by emphasizing the importance of clinical trials in hematology, reminding us that many of today’s standard treatments—like oral medications for chronic myeloid leukemia or advanced therapies for multiple myeloma and acute myeloid leukemia—are the result of past clinical trials. These studies not only push boundaries but also provide a clearer future path for treating diseases.
CAR T-cell therapy is a significant part of this evolving landscape. Initially viewed as a last resort for patients with limited life expectancy, CAR T- cell therapy has now become a transformative therapy, with trials showing such strong results that it’s being used earlier in treatment regimens, sometimes even before other established procedures like bone marrow transplants. The therapy, which re-engineers a patient’s own immune cells to fight cancer, has been particularly effective for conditions such as lymphoma and multiple myeloma. Dr. Murthy explains how this shift in timing and application has dramatically changed patient outcomes, allowing those once facing hospice care to now look forward to longer, more hopeful lives.
Dr. Murthy also highlights the meticulous approval process for CAR T- cell therapies. He discusses how several CAR T products, such as axicabtagene ciloleucel and lisocabtagene maraleucel, have been approved for diseases like diffuse large B-cell lymphoma and multiple myeloma due to their success in clinical trials. Importantly, he notes that these treatments are continually evolving, and future trials may yield even better results for more patients.
For patients interested in learning about clinical trials, Dr. Murthy stresses the importance of consulting with their oncologists. Trials are essential in driving the next wave of treatments, and they provide an opportunity to explore innovative therapies. He advises patients to ask about trial phases and the logistics involved, such as the number of study visits or the need to stay near treatment centers. Resources like clinicaltrials.gov can also help patients find reputable studies.
Looking to the future, Dr. Murthy shares his excitement about emerging therapies, including cellular treatments for solid tumors like melanoma and sarcomas. He talks about innovative approaches like gene editing and the use of different immune cells, such as natural killer cells, to make treatments safer, faster, and more effective. As clinical trials continue to expand, they offer hope for addressing even more cancer types and improving patient care.
In closing, Dr. Murthy reflects on how far cancer treatments have come and expresses optimism about the ongoing impact of clinical trials in shaping a brighter future for patients. He encourages patients to ask questions and stay engaged with their healthcare providers to explore all potential treatment options.
More:
- ClinicalTrials.gov: https://clinicaltrials.gov
- Mayo Clinic Cancer Center: https://www.mayoclinic.org/departments-centers/cancer-center
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this podcast episode, we talk to Liz Muenks, a licensed psychologist and director of the Onco-Psychology Program at the University of Kansas Cancer Center. We discuss the psychosocial and emotional challenges faced by patients undergoing CAR T-cell therapy, a groundbreaking treatment for cancer, and how these experiences affect both patients and caregivers.
Liz explains that patients typically enter CAR T-cell therapy after exhausting other treatment options, which leads to a heavy emotional burden. Many patients feel like they've "failed" previous treatments, a term that Liz finds problematic but acknowledges is often used. The pre-treatment phase is already filled with anxiety, depression, and fear. While some patients approach CAR T with hope and optimism, others carry a deep skepticism based on their past experiences. Liz notes that there are optimists, pessimists, and realists among patients, each bringing a different mindset to this journey.
Liz highlights the societal pressure on cancer patients to maintain a positive attitude, which can add stress. She dispels the myth that a positive mindset is required to beat cancer, emphasizing that embracing all emotions, including fear and worry, is crucial to managing the cancer journey. While uncontrolled anxiety or depression can negatively impact outcomes, Liz reassures that patients can still succeed in their treatment even with emotional ups and downs.
The conversation also touches on the unique side effects of CAR T-cell therapy, which differs from traditional treatments like bone marrow and stem cell transplants. While patients often feel relieved that the chemotherapy before CAR T is less intense, they are faced with neurological risks and the potential for serious side effects like cytokine release syndrome. However, these severe side effects affect a minority of patients.
Caregivers, Liz stresses, play a vital role, especially as CAR T is increasingly being done on an outpatient basis. She advises caregivers to lean on their medical teams for support and never hesitate to ask questions. Caregivers often feel immense pressure, but Liz encourages them to recognize that they are not alone in this journey. Support networks include therapy groups, on line resources such as nbmtLINK.org (and many others) and on-call specialists , all available, offering caregivers support in sharing their burdens and finding reputable resources and guidance.
Finally, Liz discusses the psychological challenges that linger after CAR T-cell therapy, especially the anxiety of cancer recurrence. Many patients struggle to move forward, constantly worrying about how much time they have before the disease returns. While some can compartmentalize these fears, others need ongoing psychological support. Liz also shares stories of patients who were initially hesitant about CAR T due to difficult past treatments but later experienced positive outcomes, reflecting the progress being made in this groundbreaking cancer therapy.
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
(Disclaimer: This episode contains advice on nutrition and lifestyle. Always consult your health care team regarding your personal circumstances).
In this episode, we speak with Terena from Tampa, Florida, about her journey with CAR T-cell therapy, covering her experiences from diagnosis through recovery and remission. Diagnosed with mantle cell lymphoma, a type of non-Hodgkin’s lymphoma, in September 2019, Terena endured years of misdiagnosis as her initial symptoms, such as severe hot flashes and night sweats, were attributed to menopause. It wasn’t until a bone marrow biopsy that she was correctly diagnosed.
Following her diagnosis, Terena underwent extensive testing, including specialized genetic tests like FoundationOne Heme and clonoSEQ, which helped tailor her treatment plan. She started on a combination therapy of Revlimid and rituximab before transitioning to CAR T-cell therapy in December 2020. She shares how the preparation for CAR T involved rigorous health screenings, including mental health assessments and apheresis, to collect her T cells.
Terena details the intensive hospital stay during CAR T, where she faced several challenging side effects like cytokine release syndrome, neurotoxicity, and significant weight loss due to radiation-induced nausea. Despite these challenges, she avoided some severe complications such as seizures or viral reactivations, thanks to preemptive treatments and vigilant care. Her remission came three months post-treatment, a milestone that was both a relief and a testament to the effectiveness of the therapy.
The cost of CAR T therapy was staggering, with an itemized hospital bill exceeding a million dollars. Fortunately, her insurance (including Medicare) covered a significant portion, though she emphasizes the importance of being financially prepared for such high medical expenses.
Post-remission, Terena has made significant lifestyle changes to support her health. She follows a strict anti-inflammatory diet, avoiding GMOs, processed foods, and conventional dairy and meat products. She shares her regimen of juicing, incorporating nutrient-rich foods like organic berries, avocados, and cruciferous vegetables. Additionally, she has overhauled her home environment, switching to non-toxic cleaning products and cosmetics, using water and air filters, and incorporating wellness practices like infrared sauna therapy and regular exercise.
Terena’s commitment to reducing environmental toxins extends to every aspect of her life. She no longer uses products with harmful chemicals, such as nail polish or hair dye, and relies on digital tools to evaluate the safety of her food and personal care products. Her integrative health approach, combining conventional and holistic practices, plays a crucial role in maintaining her well-being.
Her story is not only about overcoming physical challenges but also about the emotional and logistical aspects of undergoing such intensive treatment. From pre-paying bills and preparing meals in advance to relying on friends and family for transportation during her recovery, Terena’s experience highlights the need for a strong support system. Her openness and detailed sharing of her journey are bound to help others navigating similar paths.
Links:
- Gluten Free Scanner App: https://glutenfreescanner.app/
- EWG's "Clean Fifteen" List: https://www.ewg.org/foodnews/clean-fifteen.php
- EWG's "Dirty Dozen" List: https://www.ewg.org/foodnews/full-list.php
- FoundationOne Heme - foundationmedicine.com
- clonoSEQ - clonoseq.com
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In this episode, we talk with Dr. Hassan Alkhateeb, a hematologist from the Mayo Clinic Transplant Center, about CAR T-cell therapy. Dr. Alkhateeb walks us through the basics of this groundbreaking immunotherapy and how it has evolved as a treatment option for various cancers. CAR T-cell therapy involves collecting a patient's T cells and re-engineering them in the lab to target and destroy cancer cells. This therapy has shown promise in treating blood cancers like B-cell acute lymphoblastic leukemia (ALL), non-Hodgkin lymphoma, multiple myeloma, and even solid tumors like synovial sarcoma.
The origins of CAR T therapy date back to 2011, with the first FDA-approved product arriving in 2017. Since then, the therapy has rapidly expanded to treat more conditions. Dr. Alkhateeb explains that while CAR T is often seen as a last-resort treatment, especially in cases where patients have not responded to other therapies, early referral to CAR T specialists is becoming more common. This shift can improve outcomes, as earlier intervention allows for better preparation and potentially more effective treatment.
He outlines the evaluation process for CAR T therapy, which is similar to that for bone marrow transplants but focuses on assessing the patient’s overall health and suitability for cell collection rather than matching a donor. The cells are then modified in a lab, a process that typically takes two to three weeks. Dr. Alkhateeb notes that manufacturing failures are rare, affecting about 3% of cases.
Post-treatment, patients must be monitored closely for side effects such as drops in blood counts, risk of infections, and specific complications like cytokine release syndrome (CRS) and neurotoxicity. These side effects can be severe but are generally manageable with the right care. Caregivers play a crucial role in this process, especially since patients need to stay near the treatment center for an extended period.
Dr. Alkhateeb also shares inspiring success stories, including one patient with a particularly challenging form of leukemia who achieved remission and is now back to living a normal life. This highlights the life-saving potential of CAR T therapy and its impact on patients who otherwise have limited options.
As we conclude, Dr. Alkhateeb emphasizes the importance of early referrals to specialized centers with experience in CAR T therapy. He expresses optimism about the future of cancer treatment, noting that advancements in this field are providing new hope for patients and their families. We are grateful for his insights and encourage listeners to stay informed about emerging therapies like CAR T, which are transforming the landscape of cancer care.
Links:
- Mayo Clinic Transplant Center: https://www.mayoclinic.org/departments-centers/transplant-center
- CAR T-Cell Therapy Information: https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/car-t-cell
- FDA Approval Information on CAR T Therapies: https://www.fda.gov/news-events/press-announcements/fda-approves-first-car-t-cell-therapy
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
Today we interview Lori Dear, a registered nurse and transplant coordinator in the adult Blood & Marrow Transplant Program at Corewell Health in Grand Rapids, Michigan. Lori shares her deep insights into the CAR T-cell therapy process, a groundbreaking treatment for certain cancers, focusing on the patient experience and the critical role of caregivers.
Lori explains that CAR T-cell therapy is highly personalized, with no "cookie-cutter" approach. A diverse interdisciplinary team, including physicians, nurses, pharmacists, and various specialists, collaborates to guide patients through the process, from eligibility testing to treatment and recovery. She stresses the importance of preparing for the CAR T process by researching the therapy and arranging for a trustworthy caregiver, who will play a crucial role in managing care for up to 12 weeks after infusion. Lori points out that caregivers often include spouses or close friends, but emphasizes that anyone chosen should be reliable and available 24/7 for an extended period.
Eligibility for CAR T therapy involves various health screenings, including heart, lung, and kidney function tests, to ensure a patient’s fitness for the treatment. The goal is to minimize risks and optimize outcomes. Lori also discusses the importance of being near the treatment center, typically within one to two hours, particularly during the critical post-infusion period.
Side effects like Cytokine Release Syndrome (CRS) and ICANS (neurotoxicity) are potential complications, and caregivers play a vital role in recognizing early symptoms, such as fever or cognitive changes. Lori advises patients and caregivers to stay vigilant and report even subtle signs of illness to the medical team. She reassures that the healthcare team is ready to act quickly in the event of complications, underscoring the importance of a collaborative relationship between caregivers, patients, and staff.
Lori also addresses secondary concerns, such as financial toxicity, explaining that financial coordinators work with patients to navigate insurance coverage and secure additional assistance if needed. She mentions the psychological strain patients may experience, emphasizing the normality of feeling overwhelmed and the value of a strong support network.
As the episode wraps up, Lori shares a heartwarming story of a patient who, after multiple treatments, including a transplant, faced discouraging PET scan results. With the center and Lori's support and encouragement to explore CAR T therapy, the patient proceeded with the treatment and, despite some complications, has celebrated three more Christmases with his grandchildren. This story encapsulates the hope and life-changing potential of CAR T- cell therapy.
This season is made possible thanks to our sponsors:
Kite, a Gilead company: http://www.kitepharma.com/
and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
In season 15 of the Marrow Masters podcast, we will focus on CAR T cellular therapy. This innovative and life saving treatment is gaining momentum and has become a first line course of treatment in recent years. What does CAR T have in common with more traditional transplants? How does it differ? What is the first 100 days like? And how have clinical trials brought us to this moment?
We will hear from physicians at the heart of this cutting-edge therapy, from survivors, and from other members of the care team, including a nurse and psychologist.
Season 15 of the Marrow Masters podcast is sponsored by Kite, a Gilead company, and Bristol Myers Squibb.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
The nbmtLINK YouTube Page can be found by clicking here.
To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd
Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
This episode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.
A transcript of this episode can be found here: https://marrowmasters.simplecast.com/episodes/mens-sexual-health-gvhd/transcript
In this podcast, we welcome Dr. Jose Flores, an expert in sexual and reproductive medicine at New York's Memorial Sloan Kettering Cancer Center. We dive deep into the often challenging but crucial topic of male sexuality, particularly in the context of cancer treatment and graft versus host disease (GVHD).
Dr. Flores begins by distinguishing between sexual dysfunction and erectile dysfunction (ED). He emphasizes that sexual dysfunction encompasses various issues beyond just achieving erections, such as ejaculation problems, orgasm issues, decreased sex drive, and changes in penile shape. This broader understanding is essential when discussing sexual health with patients.
The prevalence of ED after cancer treatment is notably high, with up to 60-70% of men experiencing it post-chemotherapy, and even higher rates following pelvic surgery, specifically. Low testosterone levels also contribute significantly to sexual dysfunction, particularly after treatments targeting the pelvic area.
A critical aspect of addressing ED is breaking the wall of silence around it. Dr. Flores stresses the importance of open communication between patients and healthcare providers. Initiating conversations about sexual health can lead to better assessments and treatments. He outlines the initial steps in diagnosing ED, including patient questionnaires and lab tests, and underscores the need for healthcare providers to proactively ask patients about their sexual health.
The discussion then shifts to the impact of GVHD on sexual function. Dr. Flores notes that about 70% of men post-bone marrow or stem cell transplant suffer from low testosterone and ED. Unfortunately, without intervention, these issues do not typically resolve on their own. Patients must seek help to explore treatment options.
Dr. Flores explains the ED treatment model, which follows a stepwise approach. The first step includes lifestyle modifications and the use of PDE-5 inhibitors like Viagra and Cialis. If these are ineffective, injection therapy is the next step, followed by mechanical aids like penile pumps and, as a last resort, penile implants.
Myths and realities of PDE-5 inhibitors are addressed, clarifying that these medications require proper usage, including an empty stomach for Viagra and sufficient time for absorption for Cialis, along with sexual stimulation to be effective. Proper education on these aspects can significantly enhance their effectiveness.
Low testosterone, particularly after cancer treatment, is another major topic. Dr. Flores discusses the complexities of testosterone replacement therapy (TRT), including potential risks like polycythemia, effects on fertility, and the necessity of screening for conditions like sleep apnea and prostate cancer before starting treatment. He advises patients to preserve fertility before undergoing cancer treatments and outlines options for those with compromised fertility post-treatment.
The conversation concludes with Dr. Flores urging patients to be proactive about their sexual and reproductive health. He highlights the importance of seeking specialized care and the positive impact it can have on overall quality of life. Throughout the discussion, Dr. Flores's compassionate approach underscores the importance of addressing these sensitive issues openly and effectively.
Memorial Sloan Kettering Cancer Center: https://www.mskcc.org
International Index of Erectile Dysfunction: https://www.uptodate.com
Testosterone Replacement Therapy Information: https://www.urologyhealth.org
This season is made possible thanks to donations from Syndax and Incyte.
https://syndax.com/
https://incyte.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In today’s podcast, we have the pleasure of speaking with Angie Giallourakis, a dedicated advocate and founder of the Steven G. Cancer Foundation and Elephants and Tea. Angie shares her powerful story of being a caregiver to her son Steven, who battled cancer twice. Steven was first diagnosed with stage four osteosarcoma in 2006, and later with secondary acute myelogenous leukemia (AML) in 2008, necessitating a bone marrow transplant.
Angie recounts the emotional and physical toll of Steven’s journey, describing the intense periods of treatment and the unexpected challenges they faced. After his bone marrow transplant, Steven experienced graft-versus-host disease (GVHD). Angie shares vivid anecdotes, including a harrowing moment when Steven’s salivary glands swelled, causing his face to balloon. This incident, among others, highlights the unpredictable nature of GVHD and the constant vigilance required from caregivers.
Angie emphasizes the importance of stress management for caregivers. She advocates for finding personal ways to cope, whether through exercise, yoga, meditation, or prayer. Her own methods include Yoga Nidra, a type of meditation, and seeking solace in prayer. She also stresses the importance of good nutrition and staying hydrated, which can be challenging during long hospital stays.
Drawing from her experiences, Angie advises caregivers to seek help when needed and to communicate openly with their loved ones and medical teams. She underscores the necessity of validating the patient’s pain and symptoms, as Steven’s experience with inflammation throughout his body was initially dismissed by some as psychological.
The conversation shifts to Angie’s founding of the Steven G. Cancer Foundation. Motivated by the outdated treatments Steven received, she aimed to raise awareness and fund research for adolescent and young adult (AYA) cancer. She also talks about Elephants and Tea, a magazine by and for cancer patients, founded with her son Nick. The magazine provides a platform for unfiltered stories from cancer patients and has expanded to include workshops, community support, and therapeutic resources.
Angie’s message to new caregivers is clear: understand the potential challenges, communicate effectively, and don’t hesitate to ask for and accept help. She highlights the importance of social support, both for patients and caregivers, to navigate the emotional and physical demands of cancer treatment.
As we wrap up, Angie encourages listeners to reach out to organizations, consume available resources, and connect with others in similar situations. Her final words resonate with a message of hope and validation: you are not alone in this journey.
More:
Steven G. Cancer Foundation: https://www.stevengcancerfoundation.org
Elephants and Tea: https://www.elephantsandtea.com
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
This season is made possible thanks to donations from Syndax and Incyte.
https://syndax.com/
https://incyte.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
This epsiode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.
In this episode, we speak with Dr. Oluwatosin "Tosin" Goje, an Associate Professor of OBGYN and reproductive biology at the Cleveland Clinic. We delve into the critical and often under-discussed topic of female sexual health issues related to chronic genital graft-versus-host disease (GVHD), a condition affecting many women post bone marrow transplant.
Dr. Goje begins by highlighting the prevalence of sexual dysfunction among female survivors of malignancies, particularly those who have undergone bone marrow transplants. Astonishingly, 80% of female survivors report no significant improvement in their sexual function even five years post-transplant. This issue, often underdiagnosed and unspoken about, affects their quality of life despite their physical recovery.
She explains that the persistent sexual dysfunction is multifactorial. Factors include the systemic effects of chronic GVHD, which can cause fatigue and changes in body appearance, making patients feel less attractive. Chronic genital GVHD specifically affects the vulva and vagina, causing changes like thickening, rawness, and atrophy, leading to pain with intimacy, burning, and even bleeding. Additionally, medications can alter libido, and the overall psychosocial burden of their diagnosis and treatment exacerbates these issues.
Dr. Goje emphasizes the importance of a multidisciplinary approach to manage these problems. She details the symptoms of genital GVHD and the necessity of individualized treatment plans. Hormone replacement therapy is essential for those with premature ovarian insufficiency or menopause, which can be accelerated by the transplant. Vaginal estrogen or other moisturizers and lubricants are often required, along with immunosuppressants like topical clobetasol to manage inflammation.
Communication emerges as a vital theme throughout our conversation. Dr. Goje stresses that healthcare providers need to proactively ask about sexual health issues. Patients, often so grateful for their survival, do not prioritize these concerns. Utilizing validated questionnaires can help initiate these crucial discussions and overcome hesitation to begin the conversation. For patients, Dr. Goji advises regular consultations with a gynecologist and open discussions about their medications and any sexual health issues they experience, even before diagnosis.
Addressing the specific needs of younger women, Dr. Goje discusses options like egg freezing before treatment to preserve fertility. She also notes that many foundations and insurance plans provide financial support for these procedures.
Dr. Goje highlights the various treatments available for managing sexual dysfunction, including the use of silicone dilators, surgical interventions, and laser therapy. She encourages couples to communicate openly about their sexual health and consider sex therapy or couples therapy to address issues together. For patients experiencing chronic vaginal pain or infections, she recommends appropriate medical treatments, including potential surgery or laser treatment. She emphasizes the need for accurate diagnosis and management.
Finally, Dr. Goje shares poignant stories from her practice, illustrating her deep commitment to her patients' holistic health. She reminds us that the goal is not just survival but also ensuring a quality life post-treatment.
In another episode this season, we discuss male sexual health as it relates to GVHD.
More Information:
Cleveland Clinic - https://my.clevelandclinic.org
Replens - https://www.replens.com
Luvena -https://luvena.com
Revaree Moisturizer: https://hellobonafide.com/products/revaree
MonaLisa Touch Laser - https://www.smilemonalisa.com
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
Dr. Doris Ponce from Memorial Sloan Kettering Cancer Center delves into atypical presentations of chronic graft-versus-host disease (cGVHD). As an associate member, co-chair of the Center for Hematologic Malignancies, and director of the Graft-Versus-Host Disease Program, Dr. Ponce provides an in-depth understanding of this complex condition.
Dr. Ponce emphasizes the diverse symptoms of GVHD that often overlap with other conditions, making diagnosis challenging. She outlines the eight organs typically affected by GVHD: skin, mouth, eyes, musculoskeletal, genitourinary, lungs, liver, and gastrointestinal tract. However, she highlights that GVHD can also present atypically in organs such as the kidneys, nervous system, muscles, heart, and pancreas, causing symptoms such as serositis, effusions, nephrotic syndrome, and autoimmune disorders like vitiligo.
Atypical presentations of GVHD are rare and require exclusion of other conditions such as drug side effects or infections before diagnosis. Dr. Ponce stresses the importance of patients communicating any new or unusual symptoms with their clinicians, as these might not initially seem connected to GVHD.
Focusing on skin-related GVHD, Dr. Ponce describes common and atypical manifestations, including tight skin (sclerodermatous changes), pigmentation loss, dryness, and psoriasis-like appearances. Treatment varies but often involves topical steroids or immune suppression tailored to individual symptoms. For daily skincare, she advises avoiding frequent hot showers, using lukewarm water, and selecting gentle, fragrance-free products to prevent skin irritation.
Regarding sun exposure, Dr. Ponce recommends using broad-spectrum sunscreen with SPF 30 or higher, and wearing protective clothing to prevent rashes exacerbated by sunlight. She also discusses the use of chemical and mineral sunscreens, noting that mineral sunscreens, despite being thicker, are better suited for sensitive skin.
Peggy and Dr. Ponce discuss the Long Good Feel Better program that the American Cancer Society provides.
For patients wanting to wear makeup, Dr. Ponce suggests choosing products designed for sensitive skin, avoiding those with harsh ingredients or multiple components, and replacing makeup regularly to prevent contamination. She also warns against using organic or preservative-free makeup due to infection risks.
Haircare after GVHD often involves managing hair loss and changes in texture. Dr. Ponce advises infrequent washing, using gentle products, and considering supplements like biotin. For wigs, she cautions against those requiring glue and suggests alternatives like clip-on wigs or scarves. Hair dyeing is permissible with ammonia-free products.
Nail care post-transplant includes using nail hardeners and avoiding acrylic nails. Dr. Ponce also emphasizes checking for underlying issues like vitamin deficiencies that may affect nail health.
In closing, Dr. Ponce highlights the holistic approach to patient care at Memorial Sloan Kettering Cancer Center, addressing both medical and psychological aspects to support patients' overall well-being. She encourages patients to communicate any concerns, as seemingly minor symptoms might significantly impact their health and recovery. Dr. Ponce's dedication to improving patients' lives extends beyond treating their conditions, fostering confidence and quality of life throughout their recovery journey.
More:
Memorial Sloan Kettering Cancer Center's Tips for Managing GVHD (created by Dr. Ponce and dermatologist) Dr. Alina Markova:
https://www.mskcc.org/cancer-care/patient-education/tips-managing-graft-versus-host-disease-gvhd
American Cancer Society's Look Good Feel Better Program: https://lookgoodfeelbetter.org/
Memorial Sloan Kettering Cancer Center Website: https://www.mskcc.org/
Sally Hansen Nail Hardener: https://www.sallyhansen.com/en-us/nail-care/nail-care/mega-strength-hardener
Survivor recommended clothing brands that have SPF/UPF clothing:
- Coolibar: https://www.coolibar.com/
- Columbia: https://www.columbia.com/c/sun-protection/
- Baleaf: https://www.baleaf.com/collections/upf50
This season is made possible thanks to donations from Syndax and Incyte.
https://syndax.com/
https://incyte.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode, we chat with JR Brandt of Montana, an acute lymphocytic leukemia (ALL) survivor, about his journey through diagnosis, treatment, and living with chronic graft-versus-host disease (cGVHD). JR shares his initial diagnosis story, describing how what he thought was a minor infection led to a leukemia diagnosis complicated by the Philadelphia Positive chromosome. He underwent 26 days of chemotherapy and was eventually cleared for a bone marrow stem cell transplant at Stanford University in March 2017.
JR discusses the onset of chronic GVHD symptoms about a year after his transplant, beginning with skin changes. He was treated with Rituxan infusions, which provided temporary relief. Over the years, as symptoms re-emerged, JR continued Rituxan treatments and adjusted his care plan, even after moving from California to Montana. He highlights the importance of finding and continuing care with familiar healthcare professionals, like his physician who (fortunately) moved to Billings Clinic.
Beyond skin issues, JR describes experiencing joint tightness, dry eyes, dysphagia, and dry mouth. He mentions practical solutions like using Biotene toothpaste for dry mouth and preservative-free Refresh Plus eyedrops for dry eyes. JR also shares the importance of physical and occupational therapy, which helped him develop a personalized exercise routine. Over time, he transitioned to aquatic aerobics and massage therapy, finding these methods more effective for managing his symptoms.
JR emphasizes the significance of staying active, despite physical limitations, by adapting activities like biking with an e-bike and engaging in water aerobics. He also discusses the importance of sun protection and practical tips for managing GVHD symptoms, like using a sun hat and sunblock.
JR addresses the mental health challenges of living with chronic illness, equating his experiences to PTSD and stressing the importance of setting goals and making plans to stay motivated. He shares how maintaining an active lifestyle and staying connected with his family helps him manage anxiety and stress.
When discussing his career, JR explains how his background in healthcare was both a benefit and a challenge. He advises others with disabilities to utilize vocational rehabilitation services to explore new career paths. JR also encourages being your own patient advocate, ensuring all medical information is shared among healthcare providers to provide comprehensive care.
JR concludes with the importance of using available resources, like the Americans with Disabilities Act, for mobility aids and other accommodations (link below). He highlights the need for continuous learning and resourcefulness in managing chronic GVHD and living life to the fullest.
Products mentioned by JR in this episode:
Refresh Eye Drops: https://www.refresheyedrops.com/
Biotene for Dry Mouth: https://www.biotene.com/
DaBrim Helmet/SunShade: https://dabrim.com/
Oofos shoes: https://www.oofos.com/
Mechanix Gloves: https://www.mechanix.com/
Dycem Non-Slip tape: https://www.dycem-ns.com/
Tryvaya (Prescription) Nasal Spray for Dry Eye: https://www.tyrvaya.com/
Full list of Vocational Rehabilitation Agencies for all 50 states: https://rsa.ed.gov/about/states
Americans With Disabilities Act (ADA) Requirements for Power-Driven Mobility Devices: https://www.ada.gov/resources/opdmds/
This season is made possible thanks to donations from Syndax and Incyte.
https://syndax.com/
https://incyte.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode, we speak with Brigham and Women's Hospital and Dana Farber Cancer Institute's Dr. Hermioni "Hermi" Amonoo, an esteemed psychiatrist, psychosocial oncologist, and associate professor at Harvard Medical School. Our discussion centers on the psychological distress associated with graft versus host disease (GVHD) following a bone marrow stem cell transplant. Dr. Amonoo sheds light on the significant psychological challenges patients with GVHD face, noting that approximately 50% experience clinically significant depression, and about a third suffer from anxiety. This psychological distress permeates various aspects of daily life, affecting routines, relationships, and social roles.
Dr. Amonoo uses a powerful analogy to describe psychological well-being, likening it to a toolbox filled with various tools and equipment essential for managing distress. Key components of this toolbox include psychotherapeutic interventions, health behaviors such as good nutrition and physical activity, medication when necessary, and professional help from specialty mental health clinicians. Social support and meaningful relationships also play a crucial role in enhancing wellbeing. Peer support, for instance, can offer valuable lived experiences and tips for thriving despite the challenges posed by GVHD.
We also delve into the importance of the clinical team in managing cGVHD. The clinical team helps patients understand the disease, manage symptoms, and connect with resources. Dr. Amonoo emphasizes the importance of patients communicating openly with their clinical team, urging them not to hesitate in asking questions or expressing concerns about new symptoms.
Pacing oneself is another critical aspect discussed. GVHD is not a static condition, and symptoms can evolve over time. Patients should give themselves grace, avoid overexertion, and maintain a sustainable pace to manage their energy levels effectively. Dr. Amonoo compares this to running a marathon, where pacing is essential to avoid burnout.
Caregivers, who play a vital role in the patient's journey, must also prioritize their own well being. Dr. Amonoo stresses that caregiver well being directly impacts patient well being, encouraging caregivers to practice self-care and seek help when needed. Communication between caregivers and patients is crucial, especially as relationships and priorities may evolve during the recovery journey.
As we conclude, Dr. Amonoo offers final advice to listeners: don't worry alone. Leverage your clinical team and support networks to navigate the challenges of recovery. This collaborative approach can significantly enhance the quality of life for both patients and caregivers.
More:
GVHD Upside Down Facebook Group: https://www.facebook.com/groups/gvhdupsidedown
Elephants and Tea: https://elephantsandtea.com
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
This season is made possible thanks to donations from Syndax and Incyte.
https://syndax.com/
https://incyte.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
Season 14 of the Marrow Masters podcast produced by the National Bone Marrow Transplant Link will be out soon, focusing on the parts of chronic graft versus host disease we don't often talk about. We'll cover male and female sexuality, and atypical presentations of chronic GVHD. We'll share a patient and caregiver perspective related to chronic GVHD and take a deep dive into the psychosocial and emotional struggles of those with this rare and sometimes debilitating disease.
Guests include Dr. Doris Ponce and Dr. Jose Flores Ramirez of Memorial Sloan Kettering Cancer Center in New York, Dr. Hermioni "Hermi" Amonoo of Dana Farber Cancer Institute in Boston, and Dr. Oluwatosin Goje of Cleveland Clinic. We also speak with JR Brandt of Montana, an inspiring ALL Survivor, and Angie Giallourakis, caregiver and founder of Elephants and Tea.
Season 14 of the Marrow Masters podcast will offer survivors insight, compassion, and answers to infrequently discussed subjects. The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Incyte and Syndax. Look for all six episodes coming soon on Apple, Spotify, YouTube, or wherever you're listening right now.
And for more, visit the National Bone Marrow Transplant Link at nbmtlink.org or follow the link below.
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode of the podcast, we welcome Dr. Navneet Majhail, the Physician-in-Chief of Blood Cancers at the Sarah Cannon Transplant and Cellular Therapy Program and a widely respected leader in transplant. The focus of our discussion is the critical transitions of care that occur after patients undergo transplant and cellular therapy, a subject Dr. Majhail is deeply passionate about.
Dr. Majhail highlights the complexities of managing care transitions from specialized treatment centers back to patients' local communities. This process is crucial because it involves highly specialized care that is available only at transplant centers, making it a significant challenge for patients who do not reside in those cities. The journey doesn’t end at the treatment center; once patients return home, the role of the caregivers and community doctors becomes paramount in managing ongoing care and potential complications.
We delve into the multiple stakeholders involved in this process, including the primary care providers, hematologists, oncologists, behavioral health and physical therapy professionals, usually at the local level. The importance of a supportive care network, emphasizing that the caregivers take care of themselves is also highlighted
One of the key tools in ensuring smooth transitions is the survivorship care plan. Dr. Majhail describes it as a comprehensive document that includes information on the patient's cancer type, treatment details, potential complications, and follow-up care recommendations. It serves as a roadmap for both patients and their providers to manage long-term health outcomes effectively.
Throughout the discussion, Dr. Majhail stressed the individualized nature of post-transplant care, underscoring that there is no one-size-fits-all approach. Each patient’s needs can vary significantly based on their specific circumstances, making personalized care plans essential.
To conclude, the conversation reinforces the importance of transitional care in the journey of recovery and long-term health management for transplant and cellular therapy patients. This holistic approach not only addresses the medical needs but also the psychological and social aspects, ensuring that patients can return to their lives with the best possible support and care.
Resources:
International Recommendations for Screening and Preventative Practices for Long-Term Survivors of Transplantation and Cellular Therapy: A 2023 Update: https://www.sciencedirect.com/science/article/pii/S266663672301713X
Sarah Cannon Transplant and Cellular Therapy Program https://sarahcannon.com/service/blood-cancer
Tristar Centennial of Sarah Cannon Cancer Institute https://tristarcentennial.com/specialties/sarah-cannon-cancer-institute/
PCORI (Patient-Centered Outcomes Research Institute) https://www.pcori.org/
CIBMTR (Center for International Blood & Marrow Transplant Research) https://www.cibmtr.org/
FACT (Foundation for the Accreditation of Cellular Therapy) http://www.factwebsite.org/
Transplantation and Cellular Therapy Journal https://www.bbmt.org/
BMT Infonet https://www.bmtinfonet.org/
NMDP (National Marrow Donor Program) https://gvhdalliance.org/
GVHD Alliance https://gvhdalliance.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In today's episode, we have the pleasure of speaking with Janet Young from Massachusetts, who shares her challenging yet inspiring journey with acute myeloid leukemia (AML) and her subsequent stem cell transplant. Diagnosed in March 2022, Janet underwent a transplant in August of the same year after a regimen of intensive chemotherapy. Remarkably, her transplant occurs on her ACTUAL birthday, adding a poignant touch to her recovery story.
Janet discusses the profound fatigue she experiences post-transplant, describing it as an overwhelming tiredness that significantly limited her daily activities initially. However, over 21 months, she's progressed from barely being able to walk to her driveway to completing a two-and-a-half-mile walk, a significant achievement in her recovery.
Another major challenge Janet faces is the loss of muscle strength, for which she has been in physical therapy, greatly improving her stamina. Cognitive issues, particularly with memory and word recall, are also significant hurdles that Janet continues to navigate. These symptoms are common among transplant recipients and will slowly improve.
Janet also touches on Graft Versus Host Disease (GVHD), a complication of her transplant manifesting mainly in her lower limbs. Treatment for GVHD includes starting a medication called Rezurock, which she hopes will be effective.
Her social interactions have changed, too. She spent a year isolated post-transplant, which has altered her casual relationships although her closer friendships remain strong. Janet also mentions adapting her life to manage her energy better, using the "spoon theory" to prioritize activities based on her daily energy levels.
Concluding the interview, Janet shares how she has had to modify her approach to planning and socializing, focusing on self-care and adjusting to a new normal. She remains thankful for every new day and emphasizes the importance of support groups in her ongoing recovery.
This powerful story not only highlights the physical and emotional challenges of dealing with AML and undergoing a stem cell transplant but also showcases the resilience and gradual return to normalcy despite the challenges of GVHD. Janet's journey is a testament to the power of medical treatment, personal determination, and community support in navigating life after a major health crisis.
Resources:
Dana Farber Cancer Institute https://www.dana-farber.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
Today, we have the pleasure of interviewing Flora Stondell, an advanced practice manager and assistant director at UC Davis Comprehensive Cancer Center. Flora’s extensive experience in bone marrow transplants, particularly in malignant hematology, transplant, and cellular therapy provide us with invaluable insights.
Flora begins by sharing her journey into the field, highlighting her accidental start in transplant care and her enduring passion for her patients. Her commitment is evident as she continues to balance her clinical work with her leadership role, always prioritizing patient care and workflow improvements.
We then delved into the importance of screenings in early survivorship. Flora emphasizes that routine screenings, often neglected during the intense phases of treatment, need to be revisited post-transplant. These include mammograms, gynecologic exams, colonoscopies, dental care, and eye exams. These screenings are crucial to detect any preventable issues and address the heightened risk of certain cancers and other health concerns post-transplant.
Vaccinations were another critical topic. Flora explains the different schedules for autologous and allogeneic stem cell transplant patients. Autologous patients typically start their vaccinations about six months post-transplant, while allogeneic patients’ schedules depend on their immune system status and medication regimen. She stresses the importance of working closely with healthcare providers to ensure vaccinations are administered safely and effectively.
We also cover Graft-Versus-Host Disease (GVHD), a common complication where donor cells attack the recipient’s body. Flora describes the various manifestations of GVHD, with skin rashes being the most common and easier to treat, compared to gastrointestinal symptoms which are more challenging. She urges patients to report any symptoms promptly to their healthcare team to ensure early intervention and better outcomes.
Flora provides reputable resources for further information on GVHD, including the GVHD Alliance, nbmtLINK, BMT Infonet, and the National Marrow Donor Program (NMDP). We also acknowledged the Meredith Cowden Foundation for its dedication to GVHD awareness and support.
Caregiver support is another vital area discussed. Flora highlights the importance of acknowledging caregiver fatigue and ensuring caregivers seek support and communicate openly about their needs. She emphasizes the importance of caregivers taking care of their own health to provide better care for their loved ones.
In wrapping up, Flora advises patients to be patient with their recovery process, recognizing that it can take months or even years to regain their strength. She also acknowledges the psychological impact of the transplant journey, mentioning that PTSD can occur even years later. Flora encourages patients to seek mental health support if needed.
Flora’s insights were not only informative but deeply compassionate, reflecting her dedication to improving the lives of transplant patients and their families. We are grateful for her expertise and the valuable information she shared.
Resources:
PDF files of vaccination Schedules for Auto and Allo Transplants
UC Davis Comprehensive Cancer Center : https://health.ucdavis.edu/cancer/
GVHD Alliance: https://www.gvhdalliance.org/
Meredith Cowden Foundation http://www.cowdenfoundation.org/
BMT Infonet https://www.bmtinfonet.org/
NMDP (National Marrow Donor Program) https://bethematch.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode, Peggy interviews Beth Ades, who shares her compelling journey after being diagnosed with Myelodysplastic Syndrome (MDS) in 2021. Beth's story begins with mysterious bruises on her legs, leading to a diagnosis that required immediate hospitalization and numerous tests. Despite a harrowing seven-month diagnostic process, Beth was eventually diagnosed with MDS and was told her only chance of survival was a bone marrow transplant.
Beth recounts the emotional and physical challenges she faced, including a life-saving transplant from a 19-year-old donor in Germany. The connection between Beth and her donor has evolved into a meaningful relationship, showcasing the profound impact of such donations. Despite the difficulties, Beth's experience has been transformative, igniting a passion in her donor to pursue medicine and advocate for bone marrow registries.
Post-transplant, Beth faced severe side effects such as mucositis, which she describes as far more than just mouth sores, but a condition affecting her entire gastrointestinal tract. Her proactive approach and close communication with her medical team were crucial in managing these issues. This acute GVHD passed, but she still deals with chronic GVHD in her eyes.
Beth also shares the wisdom imparted by her social worker about the challenging transition back to everyday life. The first hundred days post-transplant were particularly tough as she felt isolated from her family's ongoing life. However, the experience has given her a new perspective, emphasizing the importance of acknowledging and dealing with these emotional hurdles.
The interview highlights the concept of paying it forward, which Beth embraced through organizing blood drives and bone marrow registry events. Her husband also became involved by signing up as a courier for the National Marrow Donor Program, (NMDP) reflecting their deep commitment to giving back. There is also a tribute race car in the works, yet another way this family is raising awareness on and off the track.
Beth's story underscores the collective effort required in the transplant journey, from medical professionals to supportive family and community members. Her reflections on gratitude, finding humor in difficult times, and the importance of small comforts, like warm blankets, offer valuable insights for others navigating similar experiences.
Beth concludes with an inspiring note on the transformative power of her journey. She appreciates the profound changes it has brought to her life, stating she would choose her transplant life over her previous one despite the hardships. Her resilience and positivity are palpable, leaving listeners with a sense of hope and the importance of community support in overcoming life's toughest challenges.
Resources:
Beth's Bone Marrow Journey Facebook Page: https://www.facebook.com/profile.php?id=100077793195673
NMDP (formerly Be The Match): https://bethematch.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode we interview Heather Knutson, a registered dietitian from the Leukemia & Lymphoma Society (LLS). Heather shares invaluable advice on nutrition management post-transplant, emphasizing the critical role of caregivers in the dietary adjustments necessary during this period.
We start by addressing the challenges that both survivors and caregivers face when transitioning back home. Heather points out the importance of preparation before the survivor arrives home, suggesting that caregivers can ease the process by shopping in advance and preparing meals that can be easily accessed and consumed. She stresses the utility of having ready-to-eat and easy-to-prepare meals and snacks available to accommodate the fatigue that is common in survivors.
A significant portion of the discussion revolves around the evolving dynamics between caregivers and survivors. Heather advises on strategies to mitigate stress and potential strain on relationships, suggesting practical tools like setting reminders for meals and medications, and using apps like the LLS Health Manager to coordinate care and dietary tracking.
Heather also dives into the specific nutritional needs of survivors, highlighting the increased protein requirements post-transplant and the importance of balanced, nutritious meals to aid in survivorship. She provides tips for ensuring safety in food preparation and handling, particularly for survivors with compromised immune systems.
The conversation further explores the emotional and logistical support that can be provided by friends and family, such as organizing meal trains or offering help with household chores, to lessen the burden on caregivers.
As we wrap up, Heather touches on the broader FREE services provided by LLS, including one-on-one nutrition consultations and meal planning support, aimed at managing side effects and improving the quality of life for survivors and their families.
This episode offers a comprehensive look at the intersection of caregiving, nutrition, and survivorship in the context of post-transplant recovery, providing actionable advice and emphasizing the power of thoughtful, well-coordinated care.
Resources:
LLS Phone Number: 877-467-1936
LLS Website: https://www.lls.org/
LLS Nutrition Website: llsnutrition.org
LLS Health Manager App: https://www.lls.org/article/lls-health-manager-app-available-now
Fairlife Product Website: https://fairlife.com/
Survivor Gregory Proctor's book Faith, Strength, and Courage: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X
Food Safety Podcast Episode with Sue Hill: https://marrowmasters.simplecast.com/episodes/sue-hill
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
In this episode, we talk with Rachael Sommer, a dedicated mother and caregiver from Cleveland, Ohio. Rachael shares the journey of her daughter Maddie, who was diagnosed with Hepatosplenic T-cell Lymphoma in October 2023, after several months of mysterious symptoms. Treated at Nationwide Children's Hospital in Columbus, Maddie's condition has profoundly impacted their lives.
Rachael recounts their initial stay at the Ronald McDonald House post-diagnosis, highlighting the physical and emotional changes Maddie experienced. Maddie's extreme fatigue and breathlessness were particularly challenging, and Rachael emphasizes the importance of adjusting to a "new normal" while staying in constant communication with doctors. Rachael found solace in the Ronald McDonald House's facilities, specifically the fitness room, which helped her manage her own stress.
The conversation shifts to the emotional toll on Maddie, who struggled with isolation from friends and the mental burden of not being able to participate in normal activities. Despite the support of friends and thoughtful gestures like sending cards, nothing could replace the physical presence of her peers. Rachael's creativity shone through when she set up a Google camera to allow Maddie to see her cats, Binks and Leon, while they were away.
Rachael discusses the importance of recognizing and respecting individual emotional needs. Maddie’s withdrawal from activities she once enjoyed, like listening to music, was particularly hard for Rachael, who feared losing her daughter's spirited personality. Eventually, Maddie slowly began to regain her sarcasm and interactions with her younger brother, Ezekiel, signaling a return to her usual self.
The financial strain of Maddie's illness is another significant aspect of their journey. Rachael praises the support from various organizations, including Carrie's Cause, Fight Like A Dozer, and the Leukemia & Lymphoma Society, which provided crucial financial aid. This support allowed Rachael to focus on Maddie's care without the added burden of financial stress.
Rachael also shares her career transition to consulting, driven by the need for greater flexibility to support her family. Her faith in God has been a cornerstone throughout this journey, providing spiritual strength and community support.
Finally, Rachael reflects on the importance of savoring small moments of joy amidst the challenges. She encourages other caregivers to focus on what truly matters, finding moments of normalcy and joy, and maintaining hope and strength for their loved ones.
Resources:
Nationwide Children's Hospital, Columbus, Ohio: https://www.nationwidechildrens.org/
Fight Like a Dozer: https://www.fightlikeadozer.org/
Leukemia & Lymphoma Society (LLS): https://lls.org/
NMDP (formerly Be The Match): https://bethematch.org/
The Bible Recap: https://www.thebiblerecap.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
Our 13th season of the Marrowmasters podcast, produced by the National Bone Marrow Transplant link, is out June 1, 2024. This season will focus on side effects of bone marrow and stem cell transplant, including GVHD.. As always, you'll hear expert advice from professionals.
You'll hear from patients who are open and honest about their experiences.
Caregivers are also a key part of the journey, who also must take care of themselves physically, mentally, and for some, spiritually.
The Marrow Masters podcast is produced by the National Bone Marrow Transplant link and sponsored this season by Sanofi. Look for all six episodes June 1 on Apple, Spotify, YouTube or wherever you're listening right now. And for more, visit the National Bone marrow transplant link@nbmtlink.org or follow the link below.
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
Ailey Armstrong, MSW, LICSW is a licensed clinical oncology social worker at Fred Hutchinson Cancer Center in Seattle. Today, she shares her insights on transitioning home post-transplant. She emphasizes the importance of continued caregiving support and suggests patients assess their needs in various aspects like medication management, meals, and transportation. Ailey advises making a list of needs and identifying which can be managed independently and which require external support, like arranging rides to medical appointments.
Ailey highlights the role of social workers and patient navigators in providing resources and support, including financial assistance and help in returning to work. She also encourages tapping into a broader network beyond the core caregiver team, involving neighbors, church members, and extended family for support.
On the emotional side, it's normal to feel a range of emotions from relief to anxiety and fear. The transition brings concerns about managing without the transplant team, handling post-transplant symptoms, and adapting to home life. She addresses the feelings of frustration, anger, and grief that stem from changes in lifestyle and identity post-transplant.
To manage these emotions, Ailey recommends acknowledging and processing them rather than avoiding them. She suggests practical strategies like using lists, calendars, and apps to manage medications and appointments. Emphasizing the importance of staying present, she introduces the "dropping anchor" exercise to ground oneself in the present, focusing on immediate sensations and surroundings.
Ailey stresses the importance of open communication with medical teams post-discharge, ensuring patients have all necessary contact information. She discusses the normality of mixed emotions upon returning home and the need for time to readjust to family dynamics and home responsibilities.
Delving deeper into psychosocial support, Ailey advises discussing mood and sleep changes with medical providers, as these are treatable. She emphasizes the significance of self-compassion and kindness, urging patients to treat themselves as they would a dear friend. Additionally, she suggests having structured daily routines incorporating essential activities and enjoyable tasks to provide a sense of normalcy and control.
In conclusion, Ailey underscores that difficult days are inevitable and recommends focusing on wellness. She advises preparing a list of activities and thoughts that induce calmness. Her final message emphasizes self-compassion, encouraging patients to treat themselves with the same kindness and patience they would offer to a loved one.
More:
Medisafe App for prescription management: https://www.medisafe.com/
National Suicide and Crisis Hotline: 988 (three digit phone number)
Book: It's OK That You're Not OK, by Megan Devine on Amazon:https://www.amazon.com/Its-OK-That-Youre-Not-OK-audiobook/dp/B075QP5SGH/
Book: When Life Hits Hard, by Russ Harris: https://www.amazon.com/When-Life-Hits-Hard-Acceptance/dp/1684039010
Book: The Cancer Companion: How to Navigate Your Way from Diagnosis to Treatment and Beyond, by Dr. Toni Lindsay (Parts 2 and 4 in particular): https://www.amazon.com/Cancer-Companion-Navigate-Diagnosis-Treatment/dp/0369366956
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
In today's episode of our podcast, we had the privilege of speaking with Gregory Proctor, a 53-year-old multiple myeloma survivor from San Antonio, Texas. Gregory's story is a testament to resilience and hope, as he details his journey through a challenging battle with cancer, starting from his diagnosis in July 2022, to his stem cell transplant, and his ongoing recovery.
Gregory shares the shock and fear he experienced when first diagnosed, particularly when advised to "get his affairs in order." He describes the mental and emotional toll of dealing with such a diagnosis, emphasizing the importance of mental strength and determination in facing the disease. His story took a dramatic turn with his return to the hospital just 14 hours after being discharged, due to a dangerously high fever. This event marked the beginning of a challenging path to recovery, filled with physical weakness and stringent precautions to protect his compromised immune system.
A significant part of Gregory's conversation focuses on the emotional challenges of coping with cancer. He talks about the initial period of depression and the process of accepting his new life and journey. This acceptance was crucial in shifting his mindset from despair to determination and finding a renewed sense of purpose.
Financial toxicity was another critical topic Gregory touches upon. He sheds light on the staggering costs of cancer treatment and the importance of understanding insurance policies and seeking additional resources. His experience highlights the often-overlooked financial burden of battling cancer, which can be as devastating as the disease itself.
Gregory also discussed the social isolation he experienced, exacerbated by the pandemic and his condition. He highlighted the changes he had to make in his daily routine, like visiting grocery stores during low-peak hours and carefully vetting his social interactions to avoid infections.
On a positive note, Gregory spoke about regaining his strength and the incremental progress he made in his physical recovery. He emphasized the mental aspect of this journey, pushing boundaries to rebuild his strength gradually. His story is inspiring, showing that persistence and small, consistent efforts can lead to significant improvements over time.
Gregory's approach to medication management was unconventional yet effective for him. He advocated for a treatment plan that made sense to him and allowed him to maintain some normalcy in his life. This part of the conversation underscored the importance of patient advocacy and being an active participant in one's treatment plan.
As for his current life, Gregory is channeling his experiences into positive endeavors. He just published his book, titled Faith, Strength, and Courage, and is actively involved in speaking engagements and consultancy work. His story is a beacon of hope for many, illustrating how one can turn adversity into an opportunity to inspire and help others.
Gregory concluded the podcast with valuable advice for those facing tough days. He stressed the importance of never giving up, finding strength in faith, and realizing that you're not alone in your journey. His message is clear: cancer may be a part of your life, but it doesn't define your entire existence.
Greg's Book: Faith, Strength, and Courage on Amazon: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X/
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
Today we welcome Diane Raab, a remarkable survivor of multiple myeloma and a licensed clinical social worker from Cheboygan, Michigan. Diane shares her personal journey through the challenging path of cancer treatment, sprinkling her narrative with both professional insights and deeply personal experiences.
Diane's story begins with the diagnosis of multiple myeloma following persistent back pain. She recounts the rigorous process of diagnosis, which led to seven months of chemotherapy in preparation for a stem cell transplant. She remembers the steroids turned her into an 'Energizer Bunny,' enhancing her productivity during treatment.
The focus then shifts to her transplant experience at the University of Michigan. Diane praises the comprehensive and detailed guide provided by the hospital, which helped alleviate much of her anxiety. She describes the fascinating process of stem cell harvesting and the convenience of using a port for medical procedures. However, the journey was not without its hardships, as Diane lost her hair due to the intensive chemotherapy, a side effect handled with grace and humor.
Post-transplant, Diane faced numerous challenges in adjusting to everyday life, from being in a highly protected hospital environment to navigating the risks of infection at home. She had to adopt new hygiene practices, including daily showers with clean towels and washcloths, and careful food preparation to avoid infection risks. Diane also shares the emotional toll of not being able to socialize freely and the adjustments she made to stay connected with friends and family.
Peggy and Diane delve into the physical changes Diane experienced after her transplant, particularly the fatigue and the need to listen to her body's demands for rest. Diane also touches on the mental aspects of coping with cancer, emphasizing the importance of avoiding negative online forums and focusing on reputable sources for information.
Diane candidly discusses the challenges of acknowledging her cancer and the psychological impact of the diagnosis. She stresses the importance of therapy and talking about one's experiences, sharing personal anecdotes that highlight the therapeutic value of open communication.
As the episode concludes, Diane offers invaluable advice for others going through similar experiences. She emphasizes the importance of following medical guidance, staying safe, and finding value in everyday life, relationships, and the simple things. Her story is a testament to resilience, adaptability, and the power of a positive outlook in the face of adversity.
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
In the podcast, Peggy welcomes Sue Hill, a registered dietitian at Henry Ford Health Cancer in Detroit, to discuss food safety and nutrition for post-transplant patients. Sue emphasizes the importance of following guidelines by the Academy of Nutrition and Dietetics to prevent foodborne illnesses, as transplant patients have suppressed immune systems. She provides detailed advice on safe food handling, stressing the need to keep hot foods hot and cold foods cold, and the importance of storing foods at correct temperatures to prevent bacterial growth.
Sue advises on meat handling, recommending thawing meat in the refrigerator and cooking it thoroughly, especially for transplant patients. She underscores the necessity of properly handling and cooking eggs, as well as ensuring fresh fruits and vegetables are cleaned correctly. A specific tip is to use a vinegar-water solution for cleaning produce. For post-transplant patients, Sue suggests avoiding pre-cut fruits and vegetables from stores and opting for whole, washable, and peelable items instead.
The conversation also covers the handling of cooked meals by friends or family, where Sue recommends preparing food in the patient’s kitchen when possible to ensure safe food practices. She also discusses the importance of maintaining proper food temperatures during transportation and reheating.
Regarding vitamins, minerals, and probiotics, Sue advises consulting with healthcare teams before adding supplements, as they monitor patients for specific needs. She highlights the value of natural food sources like Greek yogurt for probiotics.
Sue also touches on hydration, suggesting safe water sources and recommending products like Pedialyte for electrolytes. For sugar intake, she clarifies misconceptions, advocating for healthier carbohydrate choices and warning against simple sugars. Additionally, Sue advises against alcohol consumption post-transplant due to its impact on the liver, which is already burdened by medications and chemotherapy.
Lastly, Sue offers tips for managing low appetite and fatigue days, suggesting simple, familiar foods and staying hydrated. She encourages patients to inform their healthcare team if sluggishness persists. Sue concludes with a positive note on the progress in post-transplant patient care and outcomes.
FDA Safe Food Handling Guidelines: https://www.fda.gov/food/buy-store-serve-safe-food/safe-food-handling
Bananatrol Plus Prebiotic:https://www.trybanatrol.com/
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
In today's episode, we had the privilege of speaking with Alan Katz, a Massachusetts resident and a survivor of Acute Myeloid Leukemia (AML). Alan's journey through his diagnosis, treatment, and life post-transplant is both inspiring and enlightening. He shares his experience of battling the disease with a robust support system, offering hope and encouragement to those facing similar challenges.
Alan's story began with unusual health symptoms that surfaced in 2019, eventually leading to an unexpected AML diagnosis in November 2020. He recounts the various medical anomalies he encountered, including mono, vitreous detachment, back issues, and a case of poison ivy, which collectively hinted at underlying health problems. This series of events culminated in an orthopedic visit, where an MRI revealed abnormalities in his bone marrow, prompting urgent cancer treatment.
The swift pace of his diagnosis and treatment left little time for Alan to process the situation. He underwent a bone marrow transplant after finding a match through The Gift of Life, a bone marrow registry associated with Be The Match. This organization played a pivotal role in his journey, especially given the unique challenges faced by individuals of Ashkenazic Jewish descent in finding compatible donors. Since then, more Jewish individuals are on the registry, but Alan is working to improve the numbers for currently underserved communities.
Alan's transplant, a significant milestone in his recovery, was celebrated as his "re-birthday". However, his battle didn't end there. He faced a relapse 97 days post-transplant, which required further intensive treatment, including chemotherapy and a donor lymphocyte infusion. This challenging period underscored the critical role of a strong support system. Alan emphasizes the importance of support from family and friends, particularly highlighting the unwavering care provided by his wife, who became his primary caregiver.
Throughout the podcast, Alan discusses the physical and mental toll of AML treatment and recovery. He speaks candidly about the daily struggles, from dealing with fatigue and following a strict medication regimen to the mental grind of enduring a long recovery process. He shares practical advice and coping mechanisms, such as living one day at a time and never giving up, which helped him navigate the journey.
Volunteering and advocacy became integral parts of Alan's life post-recovery. He engages in various activities, including mentoring AML patients, organizing fundraising events, and promoting the importance of diverse bone marrow registries. His efforts aim to inspire, educate, and support others facing similar battles.
Alan's story is not just about surviving a life-threatening illness but also about the transformative power of human resilience, community support, and the importance of giving back. His journey from diagnosis to recovery and advocacy offers valuable insights and hope to those affected by AML and other challenging health conditions.
Gift of Life Bone Marrow Registry: https://www.giftoflife.org/
Be the Match Website: https://bethematch.org/
Book: Between Two Kingdoms: A Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Memoir-Interrupted/dp/B08BTMJ2RG
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.
In this podcast, Peggy converses with Leila Zengel, who shares her family's journey and challenges following her 10 year-old daughter Julie's bone marrow transplant. Julie, diagnosed with (refractory) Ph-like ALL in January 2018, underwent a transplant in June 2018 at the Children's Hospital of Philadelphia (CHOP) with her brother Jacob as her donor. Leila, a former school counselor and educator, delves into the complexities of transitioning to a full-time caregiver role for her daughter.
The conversation begins with Julie's diagnosis and the subsequent need for a transplant, highlighting the difficulties in finding effective treatment. Leila describes her shift from a professional career to focusing entirely on Julie's care, emphasizing the drastic change in their family life. The process was challenging, as Julie did not respond well to initial treatments, leading to the critical decision for a transplant.
Leila shares the emotional and logistical challenges faced during the post-transplant phase, particularly the adjustments required when returning home. Living two hours away from the hospital posed additional difficulties. She speaks about the nuances of balancing care for Julie while managing the rest of the family, including her son Jacob. Leila's story is a deep dive into the realities of caregiving, from handling the medical complexities to the emotional toll on the family.
Leila talks about the importance of self-care for caregivers. Leila stresses the need for moments of rest and relaxation amidst the demanding role of caring for a child with a serious medical condition. She talks about the value of simple activities like puzzles and reading, which provided her with much-needed respite.
Leila also discusses the unexpected medical challenges that emerged post-transplant, such as chronic graft-versus-host disease. Despite these hurdles, Julie's gradual recovery is a testament to the resilience of both the child and the family. Leila highlights Julie's return to normal activities, including participating in the school band, as milestones in her recovery.
Family dynamics and adapting to a new normal at home are central themes. Leila explains how they navigated through changes, setting boundaries to protect Julie's health and creating new family traditions. She emphasizes the importance of living in the present and finding joy in small moments, reflecting on the perspective gained through this challenging journey.
Lastly, the role of support systems, particularly the medical team and communities like Momcology, is discussed. Leila underscores the value of these networks in providing support and understanding to families undergoing similar experiences. The podcast ends with Leila offering insights and advice for other caregivers, highlighting the importance of community, self-care, and focusing on the present.
Momcology Website: https://momcology.org/
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Welcome to Season 12 of the Marrow Masters Podcast, brought to you by the National Bone Marrow Transplant Link, and sponsored by Sanofi. This season focuses on one critical question. "I'm home. Now what?" You'll hear candid stories and advice from survivors and caregivers. This season, you'll also get valuable advice from a registered dietician and a social worker. Season 12 of the Marrow Masters Podcast is out December 19th, 2023. Don't miss an episode - follow our show for free on Apple, Spotify, YouTube, or at www.nbmtlink.org
Loriana Hernandez felt like she had it all. She'd been a news anchor all over the country whose profile had risen nationally. In her own words, she was a clean-eating, green-drinking, yoga enthusiast. She had a two-year-old son, and was in the midst of fertility treatment when her doctor noticed there was something wrong.
Loriana had AML Leukemia, and a doctor contact at world-renowned Johns Hopkins told her "Get on a plane. Say goodbye to your son. You don't have time to waste. We have a bed waiting for you." She had reported on these stories for years. Now Loriana was the story. In fact, she still deals with the PTSD from her son calling after her down the jetway - a son who wouldn't recognize her after she'd been away for months of treatment.
At Johns Hopkins, reality set in. Because of her Cuban heritage, and lack of people of color on bone marrow registries, she was given a 25% chance of survival. She was told to put her armor on, and she believes that her healthy lifestyle indeed helped her "armor up" for her battle, which included high-intensity chemotherapy. At one point, she was sent home. Doctors believed this might be her last chance to see her son.
Loriana did receive a bone marrow transplant from her sister, and was able to see her son before Christmas. Throughout her treatment and after she was sent home to recover, she did was she was professionally trained to do as a storyteller. Loriana reported. She reported on all the trials and tribulations of the process, including the psychological challenges we don't often hear about. This would later include developing breast cancer because of her chemotherapy, which she also survived. This time she was able to be with her son during treatment, which she saw as a win.
Loriana founded Armor Up For Life, a non-profit that helps people, particularly those in underserved communities, get healthy and prepare for the fight if they do indeed find themselves in a battle like she did. They've coined the term "PRE-hab."
Armor Up For Life Website: https://armorupforlife.org/
Instagram: https://www.instagram.com/armorupforlife/
Facebook: https://www.facebook.com/armorupforlife/
Look for her podcast, "Stage Free," coming soon.
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Peter Gordon is no stranger to the National Bone Marrow Transplant Link. The author of "Six Years and Counting: Love, Leukemia, and the Long Road Onward" was very well received at our book club. Today you'll hear his story.
In 2008, this avid outdoorsman was living in the White Mountains of New Hampshire, and his girlfriend had just moved down from Montreal to marry him. Soon after, he was diagnosed with leukemia and put on the transplant waiting list at Boston's Dana Farber Cancer Institute. The wait for a donor was the hardest part for him, as weeks turned into months.
Eventually, Peter did get his transplant and returned to his idyllic surroundings to recover. Soon after, his new wife slipped on ice and shattered her knee and ankle. Peter had to take the role of caregiver as he continued his own recovery. 14 years after his transplant, Peter still battles chronic Graft vs Host Disease.
During his treatment, he began writing a blog. As Peter showed the outside world what his treatment was like, he discovered a passion for writing, eventually leading to the book. He even has a section in the book on lessons for patients, called Many Medicines Besides Drugs. Peter gives his advice, including writing down all of your symptoms, and understanding that your recovery will have peaks and valleys. And you'll also hear a great piece of advice that Peter and his wife learned from - believe it or not - their cat, Gizmo.
Link to Peter's Book: https://www.amazon.com/Six-Years-Counting-Leukemia-Onward/dp/1478750626
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Peter's book Six Years and Counting: Love, Leukemia, and the Long Road Onward
Peter's Writer/Speaker Facebook page
Peter's LinkedIn profile
Thank you to this season's sponsors:
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
We first met the incredible Sharde Fultz in our very first season of Marrow Masters, back in 2019. We wanted to reconnect with her as one our our "survivors who thrive" this season.
In 2009, Sharde was a college student, living on campus as a dance major with big dreams. Then she was diagnosed with non-Hodgkins Lymphoma. Following chemotherapy and radiation, Sharde received an an allogeneic bone marrow transplant in 2011. Having to leave school, she immersed herself in online support forums for young adult cancer patients.
When Sharde returned to school, between her recovery and chronic GVHD, she had to come to terms with some physical limitations. While she still had a passion for dance, she'd need to pivot. Her time interacting with fellow cancer survivors really sparked something in her. She wanted to be able to related to not just other patients, but also people who looked like her. She could fight against some of the inequities in our health care system.
Sharde connected with an organization called Next Step, which sends people on "campferences" - part camp, part conference. She attended a campference in 2010, and now works for the organization. Speaking engagements turned into a facilitator role for young adult cancer camps. She's now the conference director.
Sharde's advice for fellow cancer survivors is to change how you think about time, and don't compare your journey to anyone else's progress.
Next Step Fund website: https://www.nextstepnet.org/
Cassie Hines Shoes Cancer: https://cassiehinesshoescancer.org/
Stupid Cancer: https://stupidcancer.org/
First Descents: https://firstdescents.org/
Camp Mak-A-Dream: https://www.campdream.org/
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
As a patient, Mike Rubin was at the forefront of bone marrow transplants when he received one in 1987 at the age of 24. Today, he serves a director of philanthropic gifts for the very place he received his transplant - Seattle's Fred Hutch Cancer Center.
In the mid 80's, Mike was diagnosed with myelodysplasia, which would eventually morph into AML leukemia. After consulting with some of the nation's leading cancer centers, Mike and his family settled on the institution that pioneered bone marrow transplants, The Hutch. Mike's sister would be his donor.
Mike's journey changed his professional perspective. This one-time New York ad exec needed to do something different. He enrolled in nursing school but found that wasn't the best fit. So he took some time, and became part owner of a whole grain, collectively-run, organic bakery. This would would give him some time to recover and think about what he wanted to do next.
Mike went to law school, and soon found a passion for fundraising and working with philanthropic giving. Not only had this native New Yorker fallen in love with Seattle, but he also felt a deep connection to the Hutch. This led to Mike working for the organization that saved his life, and him paying it forward.
Fred Hutch Website: https://www.fredhutch.org/en.html
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
As a child, Molly Pratt had a fear of medical facilities. Today, you'll hear how her perspective changed. She's now a BSN, RN in Pediatrics at Beaumont Children's at Corewell Health's Beaumont Hospital, Royal Oak, Michigan.
Molly was an active 16 year-old high school student when she was diagnosed with Hodgkin's Lymphoma. Her first round of treatment involved outpatient chemotherapy, but she eventually needed a bone marrow transplant, which she received in 2017. Her priorities shifted from extracurricular activities and college tours to her inpatient recovery.
But her hospital stay changed her perspective. Her nurses became her social circle, playing card games with them late at night. Inspired by her care, she decided to follow in their footsteps. She now provides the same level of compassion to the kids she works with. She's able to relate to their experiences, having been through the process herself. In fact, she just had her final 6 month checkup, and she got to spend time with her patients in clinic, as a patient herself.
Molly leaves us with inspiring advice about not taking any day for granted, and having the confidence to accomplish whatever it is you set your mind to.
Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Dr. Brad Zebrack is not only an incredible social worker who specializes in oncology but he is survivor himself. Brad was diagnosed with Hodgkin's lymphoma, at the age of 25, back in 1989.
We spend some time on the term "survivor" - 40 years ago it referred to the family members left behind when someone died of cancer. Now, a survivor is anyone who is still alive, starting from the moment of diagnosis. But it's important to remember that every journey is different, and terms like this can mean different things to different people.
For some patients, they embrace "the new normal." For others, they prefer to put their cancer journey "away in a little box" and not think about it, following treatment. The important thing is that attitudes in oncology have changed. The time after initial treatment is being looked at more carefully.
Positive attitude is a term that is also frequently misinterpreted. While a good mindset has shown to have physical benefits, it doesn't necessarily mean being happy every day. Brad explains that it's more about being OK with where you are each day.
We break down Julia Rowland's "5 D's of cancer" - distance, disfigurement, disability, dependence, and death. Depending on a patient's age and where they are in life, each of these "5 D's" can factor into mindset differently.
Finally, we talk about the importance, specifically, of mental health care. It's more widely discussed nowadays, and it's a vital part of care, both during and after cancer treatment.
Connect with Brad's teams on Twitter:
University of Michigan Rogel Cancer Center: https://twitter.com/umrogelcancer
University of Michigan School of Social Work: https://twitter.com/umsocialwork
Link to Handbook of Psychooncology, by Jimmie C. Holland and Julia H. Rowland (containing the chapter on "The 5 D's" of cancer mentioned today): https://www.amazon.com/Handbook-Psychooncology-Psychological-Patient-Cancer/dp/019504308
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Welcome to Marrow Masters Season 11, sponsored by The Leukemia & Lymphoma Society and Sanofi.
The National Bone Marrow Transplant Link, established in 1992 strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship.
Season 11 of our show focuses on thriving in survivorship. We know it’s hard work. In this season, you will meet six incredible people who will share the challenges they faced as life happened, plans changed, and they learned to bend and grow post-transplant. Listen to what they have learned—how to be flexible and give themselves grace, and often time. This season will inspire us all to listen to our hearts and get on with the business of living, despite all that we have been through.
Follow the Marrow Masters podcast for free on Apple Podcasts, Spotify, YouTube, or via our website: https://www.nbmtlink.org/
As this season focuses on Graft Versus Host Disease (GVHD), we thought we'd start with the basics. Today we welcome Melora Rennie, OTR/L, CLT-LANA, an occupational therapist from the bone marrow transplant unit at Northside Hospital in Atlanta. She helps patients who are battling everything from cancer to anemia and even sickle cell disease.
Melora explains the reasons for and different types of bone marrow transplants, from autologous to allogeneic. In an allogeneic transplant, when you receive donor cells from someone else, you could face Graft Versus Host Disease. Acute GVHD occurs in the first 100 days after transplant. Chronic GVHD relates to problems seen thereafter.
Chronic GVHD can attack many different systems in the body - from integumentary (skin), to respiratory, musculoskeletal, genital/urinary, cognitive, ocular (eyes), reproductive, and vascular/lymphatic. Melora walks through the different presentations. Patients may also deal with fatigue and social isolation, which are both important to acknowledge. Melora will also address medication and side effects, including steroids.
In her role as an Occupational Therapist (OT), Melora is a key part of the rehab team. She and her colleagues help individuals develop, regain, or maintain skills necessary for daily living and meaningful activities - everything from waking up in the morning to falling asleep at night. OT's can work in acute care post-acute rehab, outpatient, in-home, or other settings.
Occupational Therapists address functional limitations, related to balance, strength, range of motion, and motor skills. They may work on a combination of endurance, balance, and strength, in order to retore and maintain the activities of daily life. They want to ward off any functional decline that may be associated with cancer treatment. As it relates to fatigue, they assist patients with patience - and energy conservation.
OT's also work with cognition, pain management, and mental/emotional well being. This is a part of patient care that cannot be overlooked. This can even include modifying a patient's favorite activity so they can continue to do it. Melora and her team also provide support for caregivers, a crucial part of any patient's health care team.
We close with the inspiring story of one of Melora's patients, as well as her advice to you and your loved ones, as you work through your transplant journey. There is hope and Melora will offer plenty of it.
Links:
Northside Hospital: Blood and Marrow Transplant Group: https://www.northside.com/locations/blood-marrow-transplant-group-of-georgia
Northside Hospital's Rehabilation Services: https://www.northside.com/services/rehabilitation-services
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
It's hard not to be inspired by the story of today's guest. Jim Bond is a four-time transplant survivor, dating back to his first transplant in 1993, following his 1992 diagnosis.. He's participated in a life-saving clinical trial. In 2002, he was running out of options after his third transplant. In fact, his doctor was ready to send him to hospice care. But Jim wouldn't take no for an answer, travelled from Cleveland to Boston, and continued his fight. Wouldn't you know, he was the seventh patient in the trial. That's right. Jim Bond was patient 007. It was fate.
A decade later, Jim was diagnosed with treatment-, Jim needed to find a bone marrow match for his fourth transplant. The website Be The Match saved his life, thanks to the bone marrow of a woman in Germany.
Jim has had to battle chronic GVHD since this fourth transplant, and he walks us through some of his symptoms, as well as what he's done to alleviate them. And he's paying it forward, with a book and series of YouTube videos (links below).
Jim's book, applauded by many organizations, called "The Man in the Arena Surviving Multiple Myeloma since 1992" is a wonderful gift to all of us, sure to inspire. All profits from the book go to cancer charities.
Jim's wife Kathleen founded the American Cancer Society's Pan Ohio Hope Ride, a bicycle ride across the state from Cleveland to Cincinnati. Note: the 328 miles holds a special meaning--as you can see here on Jim's hat.
Jim Bond has been through a lot in 31 years, but he tells us it's all worth it. He's had more time with his wife, children, and grandchildren, and been able to travel to places he'd only seen on a map. But not every day is easy. We close with some of Jim's strategies to fight through when the going gets tough.
Be The Match Website: https://bethematch.org/
Pan Ohio Hope Ride: https://secure.acsevents.org/site/STR?pg=entry&fr_id=104198
BostonSight website: https://www.bostonsightscleral.org/
Link to Jim's Book, The Man in the Arena, Surviving Multiple Myeloma since 1992: https://arenamanbook.wordpress.com/
Jim's YouTube Page with tip videos: https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg
You can email Jim at Jim.Bond48@gmail.com
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
Dr. Matt Kalaycio is the Vice Chairman of the Taussig Cancer Institute at the Cleveland Clinic. He joins us today to talk about clinical trials - the hope they bring, the lives they save, and why they are so important in regards to Graft Versus Host Disease.
For example, the popular GVHD drugs Ruxolitinib, Ibrutinib, and Belumosudil They were found to be effective, thanks to clinical trials Dr. Kalaycio walks us through how that happened.
Clinical trials are often intimidating, or even frightening to patients. People are afraid of being a "guinea pig." Dr Kalaycio addressed this and goes through all the safeguards around clinical trials, as well as the three phases of clinical trials.
This may be hard to believe, but a long time ago, doctors would experiment on patients without their knowledge or consent. Thankfully those days are long behind us, and patients now give informed consent. Everything is explained to them, and all their questions are answered. Perhaps most importantly, the patient can opt out of the trial at any time for any reason.
Many GVHD patients are offered the chance to participate in a clinical trial. If you'd like to learn more, the first place to start is with your treatment team. Beyond that, you can also visit the clinical trials website below.
We close by asking Dr. Kalaycio about some of the clinical trials he's currently involved with, as well as what gives him hope going forward. He's been working with GVHD patients and their loved ones since 1992, and he's had a front row seat for just how far treatment has come. He is compassionate and empathetic and it shines through in this interview.
Clinical Trials Website: https://clinicaltrials.gov/
Cleveland Clinic Website: https://my.clevelandclinic.org/
Dr. Matt Kalaycio bio: https://my.clevelandclinic.org/staff/473-matt-kalaycio
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
Rhonda Frederick Stewart has been through it all. She was diagnosed with non-Hodgkin's lymphoma in 2012. Her chemo treatment likely led to acute myeloid leukemia (AML). Later, she developed both a brain bleed and an aneurism. Today, she takes us through her journey of survivorship and inspiration.
Rhonda's treatment has led to Chronic Graft Versus Host Disease(GVHD) of the lungs, skin, eyes. and gastrointestinal system (GI system.) Through a combination of communications with her medical team at Johns Hopkins, and a desire to "figure things out," she tells us how she fought through each of these symptoms. In fact, many of her tips and tricks may benefit our listeners.
Throughout her treatment, today's guest developed her "Rhonda Realism." Sometimes, it's a bad day. Rhonda often relies on music, prayer, and her spirituality to get through the bad days. Because, as she is fond of saying (and singing), "The sun will come out tomorrow!"
In fact, she's put her fighting spirit to paper. You can find out more about her book below.
Rhonda's Book The Faith Fighter vs. The Health Destroyer: https://www.amazon.com/Faith-Fighter-Health-Destroyer-ebook/dp/B0B3YC5X9N
Systane eye drops mentioned by Rhonda: https://systane.myalcon.com
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
Dr. Andy Harris was diagnosed with acute myeloid leukemia (AML) when he was a 19 year old pre-med college student. After receiving lifesaving care at the University of Michigan, he vowed to pay it forward. Now he works with young people at Memorial Sloan Kettering Cancer Center in New York.
Today we do a deep dive with Dr. Harris on the unique challenges posed to kids of all ages fighting cancer. Babies are supposed to be spending this time bonding with their parents. Toddlers are supposed to be starting school. Older kids are supposed to be learning social skills, and teenagers are supposed to be forming their own identity. No matter what the patient's age, the treatment process is a major disruption to their lives and development.
Going through a life-threatening situation will change anyone's perspective, but this can be especially true of kids. And often, their peers don't know how to react. Sadly, friends may drop off. Others may not know what to say, or be intimidated to broach the topic. And patients may miss out on milestones - homecoming, prom, sports, and much more.
Dr. Harris and his colleagues work on an individualized treatment plan for each and every patient. This may include different therapies, and facilitating any necessary accommodations when they return to school and/or work. This can include coordinating with school nurses on any necessary treatment.
It's important to remember that each patient has their own timetable, both physically and mentally. Peer support groups can often be a great way to find common ground, understanding, and help.
Often, the relationship with a patient's parents can be challenging. A child who was just finding their independence may suddenly find themself in need of more support. And on the back end, parents may have a difficult time with the child regaining independence. Counseling can be another great tool here.
Dr. Harris isn't quick to tell his patients that he's an AML and bone marrow transplant survivor. He's happy to answer any questions honestly, but every cancer journey is different and he is aware of this when talking to his patients and their loved ones.
Memorial Sloan Kettering Cancer Center Website: https://www.mskcc.org/
Andy Harris Bio: https://www.mskcc.org/cancer-care/doctors/andrew-harris
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
Dr. Barbara Abernathy is the President and CEO of The Pediatric Oncology Support Team, (POST) serving South Florida. She was already working at POST, helping pediatric cancer patients and their families, when she herself was diagnosed with Polycythemia Vera, a blood cancer, in 1996. She kept her diagnosis to herself.
In 2013, Barb's disease morphed into AML, and she was in urgent need of a bone marrow transplant. A match, a young man in Germany, was found. Barb's intimate knowledge of cancer treatment proved both blessing and a curse. She quite honestly was more afraid of Graft Versus Host Disease (GVHD) than she was of dying from the transplant.
After her bone marrow transplant at Moffitt Cancer Center in Tampa, she dealt with acute GVHD of the eyes, gastrointestinal system (GI system), skin, and liver. Her acute GVHD rolled right into chronic. Her existing symptoms persisted, including hair loss due to alopecia. People assume she's still in treatment because of the hair loss.
Barb is very honest about the challenges of living with GVHD. Not being able to sweat in Florida requires a lot of planning and care. There was also the isolation during the pandemic. Fatigue is also an issue. Sometimes it's challenging just to keep the house clean. This affects her desire to have friends over; it's not that she doesn't want to see them!
Her personal experience has led to greater connections with her patients. She's walked the walk and can talk the talk. Barb talks about the importance of advocating for yourself or your child with your medical team. We also spend some time on how friends and family can help. Sometimes it is as easy as changing the plan to better accommodate the survivor--maybe a breakfast date instead of a dinner date. It's important to LISTEN and not just offer something you think they need. Peer support is also key.
Between patients and her own journey, Barb has many years of experience with GVHD. She talks about the new advances in therapy, how far we've come, and how it's given her hope for future treatment.
Barb's nonprofit, Pediatric Oncology Support Team (POST) Website: https://postfl.org/
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)
Incyte: https://www.incyte.com/
SEASON 10 OF MARROW MASTERS WILL BE OUT ON THURSDAY, JUNE 22, 2023!
Welcome to Marrow Masters Season 10, sponsored by Pharmacylics and Janssen, and Incyte. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow and stem cell transplant from diagnosis through survivorship.
Season 10 focuses on sharing hope and inspiration regarding chronic graft versus host disease, or GVHD. This season will cover the importance of clinical trials. Find out what survivors wish they and their loved ones had known before, during, and after transplant. We'll also talk about the unique needs of young adults.
This season's roster of clinicians and survivors will "keep it real," when it comes to GVHD, but also inspire you to continue on.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Incyte: https://www.incyte.com/
Kate Arnold underwent a stem cell transplant for Non-Hodgkins Lymphoma 12 years ago. She joins us today to discuss her best survivorship tips for every step of the process.
First, you need a goal--- a "why." For Kate, she wanted to get her young daughters through high school. Today, they are both in college.
Throughout this process, listen to your gut. ASK QUESTIONS - there are no stupid questions, even if they seem trivial. Make sure you have a medical team that you are comfortable with. Despite many options available in Chicago, Kate opted to have her treatment at MD Anderson Cancer Center in Houston.
It's also important to find humor in your situation. Kate says she and her husband were very open about their story, and weren't afraid to crack jokes. Also, even if you have cancer, you still have a life beyond that. Kate talks about dancing in the kitchen with her kids.
Make your mental health a priority. Through the Cancer Wellness Center, Kate found a therapist that had a specialty in oncology - she was uniquely qualified to talk about all aspects of the process - even those dark thoughts that creep into a patient's head. She learned that adjusting to a gratitude mindset was very helpful.
Because she wasn't afraid to speak up for herself, Kate often got direct phone numbers for doctors and other staff. She tells us a story about when that came in very handy.
Often, when you have cancer, well-meaning friends and family can say some pretty awful things. Kate and Peg talk about ways to pivot the conversation away from difficult topics, horror stories, or simply bad advice.
Kate is very open and honest about regrets she has had through this whole process. She wishes she had secured mental health help for her kids earlier, and she also wishes she'd been more compassionate toward bad behavior. She encourages any parent with cancer to think about where their children's outbursts are coming from. In fact, it was something her youngest said that gave her clarity.
All patients - and all treatment centers - are different. Advice and protocols change between them. It's important to listen to your medical team.
Links:
MD Anderson Cancer Center: https://www.mdanderson.org/
Imerman Angels: https://imermanangels.org/
Be The Match: https://bethematch.org/
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
This is a special episode of the Marrow Masters Podcast. Not only do we have two guests, but we are also diving into a very important topic that isn't often discussed. When you're facing transplant, fertility may be the furthest thing from your mind. But chemotherapy, radiation, and other treatments could impact your body's ability to start a family. That's why it's critically important to at least have a conversation before starting treatment.
Today's guests are Dr. Quinton Katler, a reproductive endocrinologist at Shady Grove Fertility, and Emily Beard, a Registered Nurse with Northside Cancer Institute. They are here to share their perspectives and talk about options.
Fertility preservation can take as little as two weeks. And while some patients must begin treatment immediately, there are many cases in which a two-week delay will not impact a patient's prognosis. A patient in their 20's, for example, may not be thinking about starting a family right now, but could have plans to later in life. This is why it can be critical to look at options, and have a collaborative conversation with his or her entire team.
Emily talks about the mental health issues surrounding these conversations, and Dr. Katler gets into the medical options. These can include egg harvesting and freezing, embryo freezing, and freezing of sperm. These are ways to preserve the building blocks of life before they can be damaged by cancer treatment. Following treatment and a waiting period, Dr. Katler walks us through the processes of IUI, IVF, and more. And of course there are other options, such as adoption.
Many of these procedures do come with "sticker shock," and we have a comprehensive list of resources available to our listeners, including:
American Cancer Society: https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/fertility-and-women-with-cancer/how-cancer-treatments-affect-fertility.html
Live Strong Family Building Options including Fertility Preservation: https://www.livestrong.org/we-can-help/fertility-services/helping-fertility-centers-provide-family-building-options-cancer-patients
Fertility Scout (from Alliance for Fertility Preservation): https://www.allianceforfertilitypreservation.org/about-fertility-scout/
SaveMyFertility.com: https://www.savemyfertility.org/pocket-guides/patients/fertility-preservation-women-diagnosed-cancer
Oncofertility financial assistance
Team Maggie’s Dream (need based grants available for fertility preservation costs): https://www.teammaggiesdream.org/grants
The Sam Fund: https://www.thesamfund.org/get-help/resources/family-building-support/
Other small non profit organizations that support family building in various ways
Worth the Wait (funding for family building options e.g. IVF, adoption, surrogacy, et.) - https://worththewaitcharity.com/who-we-support/
Verna’s Purse (funds for storage fees through Reprotech) - https://www.reprotech.com/vernas-purse/
LiveStrong financial assistance – https://www.livestrong.org/what-we-do/program/fertility
Northside Hospital Cancer Institute: https://www.northside.com/services/cancer-institute
Shady Grove Fertility: https://www.shadygrovefertility.com
Newsletter about this topic: https://www.northside.com/about/news-center/article-details/oncofertility-emerges-as-a-new-specialty-in-survivor-care
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Lela Prewitt was diagnosed with Acute Myeloid Leukemia (AML) n February of 2021. She walks us through her diagnosis and transplant process. This includes having to move with her wife from their small community to Seattle, so they could have access to the Fred Hutchinson Cancer Center, also known as "The Hutch."
Lela's transplant in June 2021 went well, but she developed Graft Versus Host Disease, and with it came many complications. She talks about the need for education about survivorship post-transplant. Often, patients are so focused on the procedure itself, the time following isn't given as much consideration. But this period is crucial. It can involve balancing medication and GVHD symptoms.
We cover the importance of building you own team. In Lela's case, that includes her team at The Hutch, but also her physicians back home in Port Angeles. Communication between you and your team - and between the team itself - is key. Also, medication cost can be a factor. Lela talks about advocating for yourself with different drug companies.
While you may be facing a "new normal," perspective is key. Lela says there are days where "doing" is less important than being alive. You may only have a finite amount of energy, and you need to prioritize. She cites the "spoon theory" from Christine Miserandino, that we referenced in a previous episode with Meredith Cowden - that you can listen to here: https://marrowmasters.simplecast.com/episodes/meredithcowden2
There will be changes and adjustments in your day-to-day life. For example, the long walks Lela enjoyed with her wife Carol are now aided by a wheelchair, depending on her energy level. And now her wife makes her a warm mocha every morning to watch the sunrise.
Mental health is crucial - Lela talks about everything from positive self talk to meditation and yoga. Also, know what you and your support system are comfortable talking about. Lela finds comfort in books written by cancer patients who have since passed, but her spouse isn't comfortable thinking about Lela's mortality. It's important to understand these dynamics.
We close with Lela's positive attitude and her hope to recover her strength, fight through her GVHD, and resume those long walks.
Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Nancy Robey spent 34 years as a Physicians Assistant at Johns Hopkins in Maryland. Now retired, she has a wealth of experience with pediatric transplant patients. She's here today to offer her tips and best practices to care for them.
In the pediatric transplant world, the procedure may be for something other than cancer, and many patients and families don't have the knowledge base that cancer patients do. Education is so important.
Speaking of education, how do you navigate a patient being out of school for so long? Nancy talks about different strategies she's seen, from private tutors, to virtual classrooms, and more - running through the pros and cons of each.
One key is interaction with other children and peers. Unfortunately, some friends will fade away, but social interaction is vital to a patient in isolation. This can be achieved through handwritten notes, Zoom and Facetime calls, and even now through video games and social media.
Nancy also talks about the hospital room itself. While each facility has its own rules, she talks about ways to brighten up patients' rooms with pictures, decorations, personal items, and more.
At Johns Hopkins in particular, they have a Child Life Services team, offering support to children of all ages. Your hospital may have something similar. You can learn more here: https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/patients-and-families/child-life/
Nancy walks us through various aspects of the hospital stay, as well as the isolation period that follows. It's important not to be disheartened if your patient is re-admitted. That's often a minor setback and just part of the process. After all, that's why you're close by!
We wrap up with a couple of Nancy's book recommendations, for kids of various ages and their families.
For the younger set and families: More Than You Can Handle: A Rare Disease, A Family in Crisis, and The Cutting-Edge Medicine That Cured The Uncureable - https://www.amazon.com/More-Than-You-Can-Handle/dp/0593085914
For older kids and young adults: Between Two Kingdoms, a Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Suleika-Jaouad/dp/0399588582
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Tina Masters-Odum recently lost her husband after being his caregiver for over 12 years. Today, she honors his legacy by sharing her best caregiver and survivorship tips.
We start with what you need to know at the beginning of this process. It can be easy to experience information overload. But talk to a nurse navigator or equivalent to find out things such as what are the sleeping arrangements for the caregiver? What other accommodations will the hospital have for food, a shower, and more? What about small things, like lockers and ice? How will the patient's room be cleaned? Will they use bleach, which can often exacerbate nausea?
Understand that there are protocols you will need to follow. If powerful antibiotics cause diarrhea, Infectious Disease has to come and check for a Clostridioides difficile(C. Diff infection). What about steroids?
Tina talks about learning the schedules for different doctors' rounds, and using a white board in the room to make sure questions are answered across different shifts.
In addition to many practical tips, Tina talks about soft skills - bringing humor to tough situations. Whether it was naming an IV pole and giving it a costume for different holidays, or dressing up in Halloween costumes to bring candy to doctors and nurses. The staff are people too, and it's to your benefit to make your room a fun place to be.
Tina also gives some great tips for the time after transplant, when it's time to go home. There's the initial period of being extremely careful with visitors. And also, repeat hospital visits are very likely. And there's often a negotiation that happens between the patient and caregiver. The phrase "The Doctor says..." can be quite useful.
The caregiver's mental health is vital. Tina talks about a counselor she saw, and also arranging for respite care, so she could have some time for herself. Keep in mind, every patient is different. Her military aviator husband didn't want a "Church Lady" to come sit with him, but there was a handyman who he got along well with. Maybe something needed to be taken care of around the house? Tina calls this "Dude Care."
Tina is working on a book, called "Hunters Battle: Caregiver Tips and Trips." She hopes to have it out later in 2023.
Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Jermaine Reid of Georgia was playing a recreational basketball game when, all of a sudden, he couldn't catch his breath. Jermaine had not been to the doctor in quite some time and he knew something was wrong.
Next thing you know, he was in the Bone Marrow Transplant Unit at Northside Hospital, unable to be around his children. He was fighting with acute myeloid leukemia. But it was a chance meeting with another patient on his second day that completely changed his perspective. All of a sudden he heard a voice tell him, "This is Your Assignment."
Jermaine takes us through his battle with AML, his newfound friendship with a fellow patient, and how at every step of the way, his faith sustained him. He cites several Bible verses which rang especially true for him in his time of need.
Jermaine gives us several great pieces of advice for fellow patients, including keeping perspective and goals in mind - and not getting hung up on the numbers. And he also talks about how important a made bed can be.
We close by talking about our guest's continued advocacy in this space, including a recent speaking engagement at Northside Hospital and going to college campuses.
Resources
DKMS, https://dkms.org
Be The Match, https://bethematch.org
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Today we are joined by Becky Dame, currently an Information Specialist at The Leukemia & Lymphoma Society, RN and Survivor. As Peggy says in the podcast, callers who end up talking to Becky must feel like they've hit the information jackpot. Becky is a chronic myeloid leukemia (CML) survivor who went on to become a cancer care nurse, before she transitioned to her current role. Today, we tap into her wealth of personal and professional experience.
Becky was diagnosed as a college student in 1991, and received her first bone marrow transplant in 1992. At this time, she felt called to be a nurse and changed from a music major to nursing school, marrying her husband on the day she graduated. For 18 years, she went through cycles of relapse, always on the lookout for the newest treatments for her disease. Then, in 2010, she received a matched unrelated donor (MUD) transplant, and was able to break that cycle. Today, however, Becky battles Graft vs. Host Disease (GVHD).
In 2017, she joined The Leukemia & Lymphoma Society, where she says it's her goal to share her "pearls" of wisdom with patients, caregivers, and anyone else that she can find commonalities with.
Becky speaks to the importance of finding a primary caregiver --transplant is not a journey you can go at alone. Also, plan to be out of work for at least a year - and we cover some resources available to patients.
There are also practical tips in today's podcast, such as why wearing a button-up shirt to the hospital can be a clutch move.
Finally, Becky reflects on her journey, saying there's nothing she would change, feeling like everything happens for a reason, and now she's here to help others.
The Leukemia & Lymphoma Society for One-on-One Support
https://www.lls.org/patient-support, 1-800-955-4572
Other Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/
Season 9 of the Marrow Masters Podcast focuses on “what I wish I knew before transplant.” We’re featuring advice from caregivers, doctors, nurses, and survivors. The transplant journey doesn’t end in the hospital - it’s important to maintain a positive attitude when you come home, too. This season also includes an episode on fertility preservation, a topic that isn't discussed nearly enough.
Don't miss an episode of Marrow Masters, Season 9! Follow our show on Apple, Spotify, YouTube, or on the National Bone Marrow Transplant Link’s website https://www.nbmtlink.org/
Link to Follow on Apple Podcasts: https://pcr.apple.com/id1466782199
Link to Follow on Spotify: https://open.spotify.com/show/0zkvpBo266DAQ8pPQgZHKv
This season of Marrow Masters is sponsored by the Leukemia and Lymphoma Society, and Sanofi.
Survivor Aisha Stokes of Southfield, Michigan was not a cancer patient. She battled sickle cell anemia for the first 24 years of her life. But it was a clinical trial involving what's traditionally a cancer course of treatment - that changed everything.
Aisha walks us through the decision to enroll in this trial just before an upcoming birthday would have made her ineligible. Following pheresis, she underwent an intense four day chemotherapy treatment, followed by a stem cell transplant, with her own modified cells.
Aisha is very honest about how difficult chemotherapy was for her, but how this clinical trial eliminated her sickle cell crises, or flare-ups, and how she's living her best life today.
She also speaks of her mother, who was instrumental throughout her treatment, but recently passed away. This episode is dedicated to her sweet mom.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
Dr. Corey Cutler is the medical director of the Stem Cell Transplantation Program at Boston's Dana Farber Cancer Institute and an associate professor of medicine at Harvard Medical School. As a physician at the forefront of cancer research, he talks about how the field has rapidly advanced, thanks to the volunteers who participate in clinical trials.
Dr. Cutler's field of expertise is Graft Versus Host Disease, and he starts by walking through all the different therapies that have come out of clinical trials, including Imbruvica, Jakafi, Rezurock and Abatacept.
In this episode, we also take on common myths around clinical trials, including patients who are concerned about placebo, and how they also benefit from the trials. Any clinical trial participant should put their own health first, ahead of any altruistic intentions. And not all trials involve new therapies. You can participate in a cohort study, which only follows your existing plan for research purposes.
Most importantly, all participation in clinical trials is 100% voluntary. Patients may remove their consent at any time in the process, and all trials are strictly monitored by independent review boards who place a priority on patient safety.
While Dr. Cutler's focus is on GVHD, he also speaks to the many advances in the fields of leukemia, lymphoma, and more, thanks to the progress made by clinical trials.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
If you're curious about a clinical trial, you should ask your treating physician or center, or visit the government's central registry of all clinical trials at https://clinicaltrials.gov/
Jacey Herman is a survivor. And much of that has to do with clinical trials. At age 35, this mom of two was diagnosed with with B cell acute lymphoblastic leukemia.
Late admission into a clinical trial got her to remission the first time. After a relapse, she underwent a double cord transplant when no donor could be found. Yet another clinical trial bought her more time until, following yet another relapse, Jacey found a match, and has been in remission ever since.
Peg and Jacey talk about her experience in multiple relapses and clinical trials, including being an early CAR-T recipient. The phrase "kicking the can down the road" seems appropriate, because each treatment got Jacey further along in her journey, before ultimately finding her donor halfway across the world.
We conclude by hearing about Jacey's family today, including updates on her two daughters, and how they are doing today.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
This season we are talking to doctors and clinical trial participants. But today we get a different perspective. Stacey Brown manages clinical research at Northside Hospital Cancer Institute. She's uniquely qualified to discuss what goes into an institution joining a clinical trial, as well as everything patients can expect throughout the process.
Northside is unique in that all its patients come in via referral. Stacey walks us through the paperwork process with the reminders that patients need to be their own best advocates and the important caveat that you can opt out of a clinical trial at any time.
Many people believe that patients get better care in a clinical trial, but the truth is that participants just have more people paying attention to them. We also hear about the altruistic part of volunteering for a clinical trial and how patients are helping more than just themselves. Stacey shares some success stories sure to inspire anyone considering this route.
Peg asks Stacey about the criteria she and her team use to evaluate whether a clinical trial is the right fit for them at Northside, and we conclude the conversation by discussing the recent advances in CAR-T therapy.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
Today Gleevec is an incredibly common cancer treatment. But like every drug on the market, it went through clinical trials more than two decades ago. Our guest today, Mel Mann, was the second person to receive the drug, back in 1998. And it saved his life.
Mel was diagnosed with chronic myeloid leukemia, (CML) in 1995 and was given three years to live. At the time, a bone marrow transplant was the only option. The registry had far less people on it than today, particularly people of color. At the time, only 1% of black patients could find a match. So Mel, an Army Major at the time, did what he did best--with boots on the ground, he started organizing bone marrow drives - everywhere. And he enlisted his incredible friends to do the same.
And while Mel didn't find a match, it was a chance meeting at a relative's drive that would change his life forever. He takes us through the series of events that introduced him to a clinical trial for Gleevec, and just in time. He ended up not needing a transplant. Mel is proud to say he not only got to see his daughter, five years-old when Mel was diagnosed, grow up but she has also become a doctor.
We spend some time with Mel talking about clinical trials, and how important, even life-saving they can be. As a patient, you truly need to be your own best advocate and Mel will show you the way.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
Our guest today is Dr. Mark Schroeder of the Washington University School of Medicine in Saint Louis. Dr. Schroeder walks us through the different phases of the clinical trial process, how it can benefit patients, and how volunteers can help advance cancer treatment.
We talk about interventional vs. non interventional studies, and how Phase 1, Phase 2, and Phase 3 of clinical trials function step by step. Depending on your diagnosis and prognosis, this explanation can help you decide which phase would be right for you or your loved one.
Dr. Schroeder also breaks down some of the common misconceptions around clinical trials. This includes hesitation around placebo, the idea of being a "guinea pig," and the cost of treatment - which is often covered by the entities running the trial. Also, some folks believe that trial drugs are not as good as what's already been approved. This isn't true; by participating in a trial, you might gain early access to a therapy that provides better outcomes.
We dig into how and why different studies are offered in different centers, and how to best navigate your way to finding a clinical trial appropriate for your situation. The best place to start is with your treating oncologist.
Dr. Schroeder's area of focus is multiple myeloma. He speaks specifically to how clinical trials have advanced treatment for this particular type of cancer, specifically through CAR-T cell therapy and bispecific antibodies.
We close with a story of one of Dr. Schroeder's patients, and the difference a clinical trial made for her.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
Survivor Marilyn Zagha-Keeshan joins us today. An immunoblastic T-cell lymphoma survivor, Marilyn volunteered for not one, but two clinical trials. She talks about the helpless feeling that came with her cancer diagnosis, but the empowering feeling that came with volunteering for clinical trials.
First, she participated in a trial for Azacitidine, which was given to her in between chemotherapy treatments. Marilyn talks about the resources available to her - from the staff to a detailed calendar. She really felt like she was given exceptional care.
She also volunteered for a clinical trial centered around acupuncture. While she was part of the "control arm," meaning she didn't receive the actual treatment, she talks about the benefits of being involved with that as well.
As it turns out, both treatments are now being used at Memorial Sloan Kettering Cancer Center in New York, where Marilyn was treated. And it's thanks to volunteers like her.
More:
US Clinical Trials Website: https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Omeros Corporation: https://www.omeros.com/
Incyte: https://www.incyte.com/
Welcome to Season 8 of the Marrow Masters Podcast, sponsored by Omeros Corporation. and Incyte. Season 8 of our show focuses on clinical trials. We're covering how to find them, what to expect, and how survivors have benefited from them. We also talk to healthcare professionals about how these oncology clinical trials are conducted and monitored, safely. Our goal is to answer as many of your questions as possible.
Follow our show on Apple, Spotify, YouTube, or wherever you're listening right now.
Apple: https://podcasts.apple.com/us/podcast/marrow-masters/id1466782199
Spotify: https://open.spotify.com/show/0zkvpBo266DAQ8pPQgZHKv
And for more, visit the National Bone Marrow Transplant Link online at https://www.nbmtlink.org/
Or call 800-546-5268
Season 7 of Marrow Masters focuses on chronic Graft vs. Host Disease sufferers, or GVHD "long haulers." And our first episode is about an important topic that doesn't get enough attention - reproductive and sexual health.
Dr. Areej El-Jawahri is an oncologist at Massachusetts General Hospital in Boston. And while that is her primary role, her work experience has taught her about the need to focus on these issues. A majority of transplant survivors struggle with sexual health issues and concerns regarding intimacy and fertility. Dr. El-Jawahri gives us the hard numbers, as well as a wide array of symptoms and side-effects.
She talks about the changing dynamic with couples when they become patient and caregiver, and how important it is to have open, honest communication regarding sexual health. Often, a patient's concerns about their partner are misaligned with what their partner is actually prioritizing! Communication is also crucial with your medical team. While these topics may sometimes be hard to bring up, they are important to discuss. And today's methods of confidential, electronic communication may provide a vehicle for those who are uncomfortable having these discussions in an office setting.
Dr. El-Jawahri also discusses fertility concerns for younger couples. Often, and rightfully so, there is a rush to treat a patient's cancer. But it may be worth consulting fertility specialists at the beginning of the process.
Peg and today's guest also talk about different forms of intimacy. While sex may be the first thing that comes to mind, there are other ways to be intimate and show each other attention and love.
Finally, Dr. El-Jawahri tells us about the jaw-dropping question a patient asked her that prompted her to begin paying more attention to sex and intimacy with transplant survivors.
Resources:
Dr. El-Jawahri's bio: https://www.massgeneral.org/doctors/19647/areej-el-jawahri
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Juliane Belisle, MSW, LCSW-s, at Cancer Family Care in Cincinnati, provided counseling and other services to survivors and their families. To outsiders, chronic Graft vs. Host Disease long haulers may appear fine. Survivors have made it through transplant and the immediate aftermath. But the unpredictability of cGVHD can lead to anxiety, depression, and despair and frankly, survivors get sick and tired....of being sick and tired. And they have to learn how to "re-train their brain." In this episode, Juliane shares self-care tips that are applicable not just to GVHD patients, but to all of us.
At a basic level, going to a treatment center can trigger our brain's "fight or flight" response. This includes traumatic symptoms like irritability, loss of interest, numbing, and decreased concentration. Fighting the brain's limbic system can only make things worse. Know that it's there to protect you. Juliane talks about finding safeties, or even neutral things to focus on.
Mindfulness is key. Focusing on the future creates anxiety, and focusing on the past creates regret. Focusing on the present is a way to fight these feelings and eliminate our mental "pollution." Juliane walks Peg and our audience through some breathing exercises that can help counteract our reactions to stress. (Just don't do these while driving!)
Another tip is to focus on different senses - even something as simple as washing your hands can help refocus you. There's also progressive muscle relaxation (link to a video below), and putting your feet up - way up - into an L shape.
We often catastrophize our situation - imagining the worse case scenario. Juliane often has her patients create a paper with 3 columns: in my control, out of my control, and within my influence. She walks us through that exercise.
Allow yourself to be worried or anxious, but limit that to a certain time period for the day. Self care is not selfish. And just like we treat physical symptoms, we also need to take care of our minds as well.
Resources:
Progressive Muscle Relaxation:https://www.utoledo.edu/studentaffairs/counseling/anxietytoolbox/pmr.html
Juliane's Bio: https://www.cancerfamilycare.org/clinical-profiles/?smid=2163
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Dr. Sean Smith is the director of the cancer rehabilitation program at Michigan Medicine, in Ann Arbor, as well as an associate professor at the University of Michigan. He's dedicated to helping patients improve function as it relates to a variety of musculoskeletal, neurological and cognitive deficits related to cancer and its treatment.
Dr. Smith says every patient is different, and they may try many treatments at once to find the best fit for each individual situation. The sooner he and his team can intervene, often the better the results.
Skin and muscle tightening can sometimes occur with chronic GVHD. One of the first treatment methods is stretching - whether that's giving a patient stretching exercises to do or employing the help of a physical or occupational therapist. There are also other methods to break up scar tissue. Other tactics may include cortisone injections, paraffin baths, and oral or topical steroids. Dr. Smith explains how these tools are used.
Fatigue is a very common issue relating to chronic Graft vs. Host Disease. This can be due to anemia, drug side effects, poor sleep, and other factors. Our guest walks through treatment of each of these individual symptoms.
Exercise, mindfulness, and even meditation are key tools in Dr. Smith's toolbox. Your definition of exercise may be different than before transplant, but spending the time doing what you can is so important. He shares some sobering numbers about how quickly muscles can deteriorate after transplant if not used. Dr. Smith also talks about "pre-habilitation" - the exercise you can do before transplant.
Resources:
Dr. Sean Smith Bio: https://medicine.umich.edu/dept/pmr/sean-r-smith-md
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Heather Jim, PhD, is a senior member and co-leader of the Health Outcomes and Behavior Research Program at Moffitt Cancer Center in Tampa. Today she walks us through ways to combat sleep issues related to chronic Graft vs. Host Disease. Hopefully the tips here will help all of us get a better night's sleep.
Heather begins by walking us through the importance of sleep, and how that changes as we age. Interestingly, 30% of the general population report sleep problems, but for transplant recipients, that number can rise as high as 60%. We cover some of the most common types of sleep issues, including sleep apnea, insomnia, and restless leg syndrome.
While there are sleeping medications out there, Heather explains Cognitive Behavioral Therapy for Insomnia, or CBTI. While there are psychologists and social workers who specialize in CBTI, there are many practices we can all employ on our own, to stop sabotaging our sleep cycles. This includes mobile apps, linked below in our show notes.
There are seven rules CBTI rules to help improve sleep:
- Set aside an hour to wind down before bed (this includes turning screens off!)
- Only go to bed when you start to feel sleepy.
- If you can't fall asleep in 20-30 minutes, get up and do something boring.
- Use an alarm clock to get out of bed at the same time every day.
- Use your bed and bedroom only for sleep and sexual activities.
- Limit naps during the day, especially after 1pm.
- Limit the time spent in bed to actual time sleeping.
Heather explains that good quality sleep is not only important for patients, but for caregivers as well. Sometimes, transplant can be more stressful for the caregiver, and if they don't take care of themselves, it will harm their ability to help their patients.
Resources:
Shut Eye App: https://www.shuteye.ai/
Somryst App: https://www.somryst.com/
Calm App: https://www.calm.com/
Heather Jim's Bio: https://moffitt.org/research-science/researchers/heather-jim/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Colorado's Ann Haehn and her daughter Genny are two truly special people. Today, Ann takes us on their journey through Genny's transplant and subsequent battles with chronic Graft vs Host Disease.
After a very grim diagnosis, Ann and the rest of Genny's village found a doctor that felt he could get Genny through transplant at Colorado Blood Cancer Institute. During a long six-month pre-transplant process, Ann moved in with Genny and her kids. Genny's new boyfriend (now husband) Josh was also a huge help as well.
After the transplant came 30 days of isolation, followed by 100 days of living in an apartment near the hospital. That meant finding 130 days of child care, which Ann managed to do, with a lot of help from a lot of people, while she stayed with her daughter. Then, two weeks prior to hospitalization, Ann lost her mom unexpectedly.
Ann speaks candidly about what it took to get Genny through transplant and recovery, cleaning up puke, watching the same movie over and over again when Genny kept falling asleep, laughing, crying, blogging, and even some wine for Ann at the end of the night.
Caregivers are expected to be stoic and talks about dealing with her emotions and being a human herself. This includes maintaining the mother-daughter relationship through the caregiver-patient one.
After transplant, Genny developed GVHD, which at first was a good sign because it meant the transplant was working. Over time though, this developed into chronic GVHD, which affected Jenny's joints and ability to walk. She sometimes needed a cane, walker, or wheelchair.
Before treatment, Ann promised Genny a trip to Europe. And when she was well enough, the whole family went - with a wheelchair, IV bags, medication, and more. You'll crack up as Ann tells you the hilarious moments of this trip. Essentially, they found a way to do what they wanted to do, in spite of Genny's GVHD.
Ann talks about how far GVHD treatment has come, and how Genny's GVHD seemed to "level off" after about six years. While the unpredictability of this disease can be frustrating, for most, brighter days are ahead.
Finally, Ann describes her experience as a caregiver in three words. "A sacred honor."
Ann and Genny's experience led them to create an organization called Genny's Hope, which has recently joined the Small Choices Foundation, started in fact, by one of Genny's nurses! Links Below.
Resources:
Small Choices Foundation: https://www.smallchoicesfoundation.org/
Genny's Hope: https://www.smallchoicesfoundation.org/gennyshope
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Today, survivor and advocate Meredith Cowden talks about being your own advocate regarding GVHD. As patient advocacy director of the Meredith Cowden Foundation, she has a wealth of resources to share, many of which are linked below.
(If you'd like to hear a more detailed version of Meredith's story, you can listen to Season 6, Episode 4 of the Marrow Masters podcast here: https://marrowmasters.simplecast.com/episodes/meredithcowden )
After a diagnosis of AML, Meredith received an allogeneic bone marrow transplant from her sister in September of 2001. In October, she developed acute Graft vs. Host Disease, which later became chronic Graft vs. Host Disease. She talks about the frustrating, unpredictable nature of cGHVD, and how she began looking for resources. Unfortunately, Google was not very helpful. After some collaborative work, she presented a comprehensive list of resources at the 2020 NIH Patient Advocacy Summit. The list includes peer support groups, organization that can help with financial assistance, and more.
We've got her entire list on our website here: https://www.nbmtlink.org/wp-content/uploads/2022/06/cGVHD_Resouces_2020_NIH_Summit.pdf
Meredith talks about "spoon theory." You only have so many spoons for your day- she explains. Meredith also talks about the Meredith Cowden foundation, and their GVHD symposium series going on in 2022-2023.
There's a book that Meredith recommends, written about prednisone, from the perspective of a doctor and a patient. It's called Coping with Prednisone and you can find it here: https://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603
Meredith is now 20-years post transplant and recently turned 40. We spend some time discussing how she's been able to decipher which physical elements are related to GVHD versus just getting older - something she didn't think about at the time of her transplant.
We wrap up with more practical advice from Meredith. She talks about deciding what your priorities are. What's most important to you? That can help you set a routine and find balance in your life. And it's OK to say "no" to people sometimes. Finally, be your own best advocate. Don't be afraid to speak up with your doctors and be part of the conversation around medical care.
More Resources:
The Meredith A. Cowden Foundation: https://cowdenfoundation.org/
Spoonie Day App: https://www.spoonieday.com/
The National Bone Marrow Transplant Link's updated book on Graft vs. Host Disease:https://www.nbmtlink.org/product/graft-versus-host-disease/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacylics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Today, Peg is joined by Heather Younker, RDN, CSO, a dietician at the John Theurer Cancer Center at Hackensack University Medical Center. We cover all things related to Graft vs. Host Disease and diet. Nutrition is important for everyone, but especially those with GVHD, in order to prevent malnutrition and other issues. Registered dieticians and nutritionists can be key in a multidisciplinary approach. It's important to keep your entire health care team in the loop so they can be aware of all issues. GVHD can present in many different ways and at any time.
Symptom management is key for Heather and her coworkers. This can be gastrointestinal issues related to GVHD, or side effects from various medications. Sometimes, this can cause a fear of eating, which can result in unhealthy weight loss and muscle mass. Sometimes food sensitivities can develop, such as one to lactose. Maybe digestive enzymes are needed, or a change in diet.
Oral care is also important, as GVHD can affect the mouth, teeth and throat. Maybe softer foods are needed. Maybe you'll need to stay away from acidic, citrus-ey foods. Maybe pureeing foods can be helpful. Heather even mentions a patient who pureed his whole breakfast of sausages, eggs and rice!
Sometimes nutritional supplements like Ensure, Boost, or Orgain can be used to add calories and nutrients to the diet. And when it comes to smoothies, Heather prefers homemade to store-bought so that you can have more control over the ingredients.
Hydration is important for everyone, but especially GVHD patients. You need to moisturize your system inside and out, and there are many ways to do this besides just water. Antioxidants found in fruits and vegetables are also key.
Sometimes patients struggle with loss of appetite and other symptoms. One way to ensure you're getting your needed calories, protein, vitamins, and other nutrients can be to eat smaller meals throughout the day instead of three large ones. When your GVHD is active, you actually need more calories and nutrients. And of course, exercise is key.
Resources:
Hackensack John Theurer Cancer Center: https://www.hackensackmeridianhealth.org/en/Services/Cancer-Care?fbclid=IwAR0ANqlbRxjJs_yJVG8YxzS9LW2YefeSBNzmmeJG85UyPZeVMM9KUbepY3Q
National Institutes of Health (NIH) website: https://www.nih.gov/
American Institute for Cancer Research: https://www.aicr.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacylics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Welcome to Marrow Masters Season 7, sponsored by Pharmacyclics and Jansen, and Kadmon, a Sanofi company. This season we focus on long haulers – those who are dealing with chronic graft vs host disease. We cover different treatment options.
We’ll cover some topics that aren’t always easy to bring up.
And we’ll cover the importance of taking care of not just your physical health, but your mental health as well.
Season 7 of Marrow Masters is out June 21st. Follow our show for free on Apple Podcasts, Spotify, YouTube, or wherever you’re listening right now. For more, visit the National Bone Marrow Transplant Link at NBMTlink.org.
Dr. Sung Choi is a pediatric bone marrow transplant physician at Michigan Medicine (University of Michigan).
Dr. Choi joins us today to discuss the unique challenges for pediatric patients as it relates to Graft Versus Host Disease (cGVHD). Passionate and knowledgeable, Dr. Choi will tackle it all, including target organ damage, the cytokine storm, clinical trials and much more.
Classic organs affected by acute GVHD include skin, liver and GI tract. Did you know that typically the skin is the most affected in both pediatric and adult patients struggling with GVHD? (Check out our other episode with Dr. Cowen of the NIH in this series for more on all things skin GVHD.)
Risk factors (of GVHD) are also discussed--how a mismatch between the donor and recipient influences the onset of GVHD as well as age, conditioning chemo and much more. High dose steroids are covered and did you know that pediatric patients do not always respond to steroids? Listen in for other options.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources
Dr. Choi bio: https://www.uofmhealth.org/profile/263/sung-won-choi-md
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Senior Clinician Dr. Edward Cowen is Head of the Dermatology Consultation Service at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH. Dr. Cowen will share his expertise on skin issues as they relate to Graft Versus Host Disease (GVHD).
In this episode Dr. Cowen "covers" it all--dry scaly skin, red rashes, skin fibrosis and fasciitis. His expertise will make patients and caregivers alike feel more confident and knowledgeable about skin GVHD. When should you seek treatment and which doctor should you see? He will address clinical trials, long term prognosis and talks about what is on the horizon for the treatment of skin GVHD.
He mentions topical over the counter treatments like Aquaphor and Sarna, as well as oral antihistamines like Benadryl, Allegra, Zyrtec, and Claritin.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Dr. Cowen's ruxolitinib trial:https://clinicaltrials.gov/ct2/show/NCT03395340
National Institute of Arthritis and Musculoskeletal and Skin Diseases:https://www.niams.nih.gov/
NIH Clinical Trials Website:https://clinicaltrials.gov/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
https://www.niams.nih.gov/about/directory/edward-w-cowen-md-mhsc
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Molly Gallogly, MD, PhD, Attending Physician, and director of the Graft Versus Host Disease (GVHD) program at the Seidman Cancer Center in Cleveland, OH, is one busy doctor. Dr. Gallogly will share what happens at their incredible GVHD clinic and why it is advantageous to have a designated GVHD clinic. Newly diagnosed patients are evaluated and seen regularly as long as their GVHD is active. A detailed head-to-toe exam and full skin exam are standard and each GVHD patient is accurately staged and graded.
We will learn about the importance of a symptom diary, and help you anticipate potential side effects from steroids. ("Buy one get three free"-you'll want to hear what that means.) Dr. Gallogly compares GVHD to a storm at sea.
Clinical trials can be a revolving door. You can't help but feel the excitement learning more about them.
And don't forget slow and steady wins the race. Listen in for many more tips sure to make you feel better educated and equipped to deal with GVHD.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
University Hospital (Cleveland)'s Seidman Cancer Center BMT Program:https://www.uhhospitals.org/services/cancer-services/hematologic-malignancy/stem-cellbone-marrow-transplant-program
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Meredith Cowden was only 19 years-old when she was diagnosed with AML about 20 years ago. Meredith has been dealing with GVHD in many manifestations for most of these two decades. Polymyositis and steroid use are discussed as well as the incredible perseverance and determination this young lady carries with her each day.
Meredith, a clinical counselor, is in the business of helping others thrive during the work day. And in her free time, she is always willing to share her story and her heart to help others.
Her loving parents started the Meredith Cowden Foundation many years ago and is is an incredible organization dedicated to educating people and also raising funds for research to help those suffering. They host symposiums and secure the top experts in the nation to address these topics. The link to the foundation is located below.
This wonderful episode is real, honest and chock full of tips and suggestions sure to help those dealing with Graft Versus Host Disease (GVHD) - including documentation, apps, being your own best advocate, and her "spoon" trick.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Meredith Cowden Foundation: https://cowdenfoundation.org
Pema Chodron’s website: https://pemachodronfoundation.org
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Dr. Catherine Lee is an Associate Professor of Medicine in the Division of Hematology/BMT at the Huntsman Cancer Center, University of Utah. Dr. Lee's clinical expertise is in classical transplantation (autologous and allogeneic) and newer cellular immunotherapies (i.e., CAR-T cell) for the treatment of blood diseases in adult patients. She runs a Chronic Graft-versus-Host Disease and Long-Term Follow-Up Program which is designed to provide medical care specific to patients with chronic Graft Versus Host Disease (cGVHD) and late effects of transplantation and other cellular therapies.
Dr. Lee covers it all and breaks it down for us. Why is cGVHD thepredominant cause of late morbidity and death, not due to relapse, for both children and adults after an allogeneic or a donor transplant? What strategies will help and prevent GVHD? Get ready for a big dose of hope as Dr. Lee shares her incredible knowledge and know how.
New drugs on the horizon are discussed as well as novel treatment approaches that use little or no systemic steroids for diagnosed cGVHD. And you won't want to miss Dr. Lee's discussion on clinical trials. Remember, your participation in these trials allows safe and more efficacious treatments for cGVHD to become a reality! This podcast is enlightening and educational and offers hope to those suffering with GVHD.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Huntsman Cancer Institute website: https://healthcare.utah.edu/huntsmancancerinstitute/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Perry Cheathem noticed swelling in his legs in 2014. After many rounds of chemo that were not working, Perry had his life-saving bone marrow transplant in June of 2015. This determined man of faith and dad of five children says he was actually honored to get cancer, deciding it was a testimony to help others. He was not afraid and is at peace with the process, walking with God through it all.
Perry shares his donor story and his desire to help build awareness of the donor process, especially as it relates to minorities. Perry's Graft Versus Host Disease (GVHD) issues included dry eyes, dry mouth, and speech issues. These led to dental and breathing issues. But it just doesn't stop this determined, resilient guy from sticking to it and succeeding. In fact, Perry was recently able to run a three mile race.
Perry shares his story of love and support from family and friends--and you won't want to miss a 20-year story of friendship that stood the test of time. Perry hasn't let cancer define him and his story will inspire you to keep moving forward and plan for the future with grace and love in your heart.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
In June of 2016, 69 year old retired CPA Harry Johnston went on a safari in South Africa. He did not feel well and even thought he'd been bitten by a tick. Turns out, he was diagnosed with AML. But there is good news.
Tune in as Harry shares his transplant story and Chronic Graft Versus Host Disease (cGVHD) issues that began in 2019. He had thickening of the fascia – the layer of tissue below the skin. This caused tightening around the stomach, which interfered with air intake. Then he had to change studies and centers due to COVID protocols. Harry shares that although they have been unable to reverse the effects of his GVHD, the clinical trials have helped reduce the progression of the GVHD as different drugs were introduced.
And you have to hear the story of how Harry met his donor, a woman in Sweden, through luck and perseverance.
Harry will share that although his lifestyle is certainly somewhat restricted, he and his family are enjoying life. In fact, he just made his first post-COVID venture to Montana for a week of fly fishing.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Lisa Loutzenhiser was 56 years-old when she felt off in December. It was the holidays, and she was simply just exhausted. A teacher, she carried on until she needed to finally call in sick one day. Her diagnosis in late January was AML, and the journey began with her transplant in May of 2020. Oh, and let's add COVID to the story too.
Lisa will share her Graft Versus Host Disease (GVHD) story including her skin issues, precautions needed for being in the sun, gut issues and much more. "As if the diagnosis wasn't enough, GVHD was an extra job," she says.
Lisa is supported by her now-husband and two daughters, and she shares the importance of finding your group and what she calls "the benefits of cancer." You won't want to miss that. This incredible lady is honest about what it took to get to this point. She's now back to gardening, enjoying her vineyard, and traveling the country in her Fifth Wheel camper.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Welcome to Season 6 of the Marrow Masters podcast series, sponsored by the National Bone Marrow Transplant Link, Incyte Corporation and Kadmon. The National Bone Marrow Transplant link, established in 1992, strives to help patients, caregivers, and their families cope with the psycho-social challenges of transplant, from diagnosis through survivorship. Season 6 focuses on advice for dealing with Graft Versus Host Disease (GVHD). We’ll hear from health care professionals on the front lines of this disease.
We will also hear from patients who have many different perspectives on cancer and GVHD.
Don’t miss Season 6 of the Marrow Masters podcast. Follow us on Apple, Spotify, or wherever you get your podcasts. For more information on the Marrow Masters podcast and the National Bone Marrow Transplant link, visit nbmtlink.org.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
Thank you to this season's sponsors:
Incyte Corporation: https://www.incyte.com/
Kadmon: https://kadmon.com/
Welcome to Marrow Masters, Season Five, sponsored by the National Bone Marrow Transplant Link, Seagen, Omeros Corporation, and The Leukemia & Lymphoma Society. The National Bone Marrow Transplant Link, established in 1992 strives to help patients caregivers and their families cope with the psychosocial challenges of transplant from diagnosis through survivorship.
In season five, join Peggy Burkhard, executive director of the nbmtLINK as she focuses on all things survivorship.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
SeaGen Inc: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Juanita McReynolds received her life-saving bone marrow transplant back in 1996 after being diagnosed with acute myeloid leukemia (AML). In our first episode of Season 5, McReynolds talks about perspective and purpose. Post-transplant, Juanita was able to care for her then-disabled husband, an ailing mother-in-law, and a sibling. Speaking of siblings, learn more about Juanita's incredible journey with her brother who was her donor. She claims her transplant also fixed her heart--you won't want to miss this one.
Juanita also speaks to self care-- a critical part of recovery. She takes care of her body with exercise, and she takes care of her mind by singing, and volunteering with her church as well as our family here at the LINK.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Mike Ansley (seen left in this photo) is a 10 year Acute lymphocytic leukemia (ALL) survivor and military veteran. When he was in the Navy, he and his colleagues used the term "embrace the suck." There were times when they were in tough situations, and they had to acknowledge their limitations. The same is true for survivorship.
Another mantra Mike lives by is "Faith, Family, Friends." As long as you keep those three things as priorities, the rest is just "stuff." Lean on your faith, family, and friends as you go through this journey. They can even help you when life throws you curve balls.
Clinical trials have been a key part of Mike's journey, and he walks us through that process, as well as how distance running has remained a big part of his life. Go Mike!
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Mike's blog: "Embrace The Suck:"https://www.nbmtlink.org/author/mansley/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Licensed Clinical Social Worker and Manager Karen Hartman of New York's Memorial Sloan Kettering Cancer Center joins us today to talk about life after transplant. So much goes into medical care up to, during, and immediately after transplant. But survivorship is its own key phase of the experience.
Senses of loss and vulnerability are common during this part of the cancer experience. Medical care is not as intense, and fear or recurrence can often creep in.
Anxiety can be triggered by expected events, such as scans, also know as "scanxiety", or even unexpected moments like a certain song or even a smell.
It's important for a patient's support system to understand that the cancer journey does not end with treatment. Recovery and survivorship are lifelong processes and patients need people to lean on.
The phrase "the gift of cancer" may sound absurd, but Peggy and Karen explain what that really means in today's discussion.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
The cancer journey is a difficult for everyone, but being diagnosed as a young adult brings its own unique set of challenges. Stephanie Scoletti was diagnosed with Acute lymphoblastic leukemia (ALL) just before her 20th birthday. She changed her career focus from pharmacist to social worker and wants to provide resources and kinship for those in similar circumstances.
For survivors, some friends may not know what to say or do, but others step up in ways you'd never imagine. Her non-profit organization, Young Adult Survivors United, YASU, helps patients and survivors "find their herd" and connect with folks in similar circumstances. Through the pandemic, she's been able to grow her virtual programs and expand her community. Stephanie also shares stories of two amazing individuals she's been able to work with.
Additionally, Stephanie husband Matt Scoletti hosts a podcast called Livin the DREAM. Matt is a health coach and motivational speaker who helps people learn practical ideas to level up their health, wellness, and energy. D.R.E.A.M. is an acronym that Matt uses that stands for Diet, Rest, Exercise, Attitude, and Meaning. If you own these 5 topics, your life will be FULL OF INCREDIBLE ENERGY! Check them out!
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
All Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Stephanie's blog on "Finding Your Herd" on Elephants and Tea: https://elephantsandtea.com/survivorship/finding-your-herd-yasu-style/
Stephanie's Group, Young Adult Survivors Unite Website: https://www.yasurvivors.org/
Imerman Angels Website: https://imermanangels.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
No amount of medical training can adequately prepare you for the news that your 9 month-old-daughter has a rare form of leukemia, AML. But that's the position Dr. Omar Durani found himself in when Kenza was diagnosed in 2016.
Throughout his touching story, Dr. Durani talks of he and his wife moving into their daughter's 100 square foot hospital room, the roller coaster of multiple rounds of aggressive chemo, organizing bone marrow drives through DKMS, and ultimately getting Kenza into a clinical trial.
After failing to find an exact match, Dr. Durani became his daughter's donor for a haplo transplant when they found out his wife was pregnant with their second child.
Dr. Durani shares so many lessons learned throughout this adventure - including the need to register more bone marrow donors in minority communities, the importance of being a strong patient advocate for you or your child, and the importance of clinical trials. Also, don't be afraid to ask for multiple medical opinions. Your medical teams will not be threatened - they want to get it right.
And how is Kenza today? You will want to hear all about it. Inspiration at its best.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
DKMS Donor Registry:https://www.dkms.org/ DKMS is the world’s largest bone marrow donor center with over 10.5 million registered donors and operations in seven countries.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Additional media pieces on The Durani Family Journey:
- https://www.youtube.com/watch?v=CnasRnxGw6w
- https://www.12news.com/article/news/local/valley/bone-marrow-donors-sought-among-islamic-community/75-230814673
- Cure Magazine article: https://www.curetoday.com/view/coming-of-age-new-research-efforts-are-improving-treatment-of-childhood-blood-cancers
- https://browngirlmagazine.com/2016/05/cancer-touches-everyone-help-cure-kenza/
- https://www.healthline.com/health-news/bone-marrow-drive-for-muslim-girl-goes-viral
- https://cw33.com/news/save-kenza-little-girl-with-leukemia-spreads-awareness-hope/
- https://fwtx.com/news/voice/dallas-toddler-raises-awareness-across-country/
Anna Holness, a Myelodysplastic syndromes (MDS) survivor received her transplant in 2017. Her background as a physician gave her a unique perspective as she navigated her journey. Anna researched, gained as much medical knowledge as she could, and even planned for the worst case scenario. She wanted to make sure her kids had as much knowledge and as many memories as possible - just in case. After all, forewarned is forearmed. Anna explains how she empowered them by preparing them to lessen their potential burden.
Anna was motivated by her ability to take charge of the things within her control. In doing so, she taught her son and daughter valuable lessons about resiliency and adaptability. Now out of college, they feel like they can handle anything.
We also cover the importance of peer support - the ability to talk to someone who's been through what you're going through. And finally, this journey has given Anna a fresh perspective, and appreciation, for the beauty in life.
And the best part--Anna is thriving today as is her family! She will share her thoughts regarding yoga and the calm it brings as well.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Yoga for Cancer - Y4C -https://y4c.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Chronic lymphocytic leukemia (CLL) survivor Pete Thomason joins us today to share strategies for dealing with the emotional challenges of survivorship. Following his diagnosis and transplant six years ago, his daughter introduced him to art therapy. Pete is also a big proponent of mindfulness, meditation, and visualization and walks us through how these strategies have helped him through survivorship.
Equifinality is an important concept to Pete as well. He explains what that is and how to get there. Pete prefers the phrase "some kind of normal" to "the new normal," and this is where his pickup truck analogy comes in.
We also talk about the importance of peer support to both survivors and caregivers.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Jennifer Barish is now a 10 year survivor of acute myeloid leukemia (AML), and today she walks us through her journey of returning to work, battling chronic GVHD, and more.
We always hear the cliché about this journey being a marathon, not a sprint. But Jen's journey of slowly returning to work after a five year leave of absence illustrates this point. She needed a plan, but also needed to be flexible with that plan.
Sometimes, the simplest quote can provide inspiration. Jen knows that "Life is About Learning to Dance in the Rain." She talks about deriving inspiration from that advice, how its helped on her journey, and how she now mentors others.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Dr. Katy LaLone is a Consultation Liaison Psychiatrist at Seidman Cancer Center, University Hospitals and Assistant Professor of Psychiatry, Case Western Reserve University in Cleveland, OH. Today, Dr. LaLone joins us to discuss the importance of mental health care in survivorship.
PTSD, or post traumatic stress disorder, is very common in survivors. Cancer and treatment are, in fact, a trauma. There are treatments, biopsies, isolation, frustration with our medical system, and so many other stress-inducing events. These often result in everything from anxiety to panic attacks.
In some cases, psychiatry can be helpful tools in learning self-awareness, self-understanding, and coping skills. Dr. LaLone explains the many different treatment options; no two patients are alike.
Finally, Dr. LaLone provides some general advice for anyone going through the cancer journey.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
One reference mentioned in the podcast was the Gathering Place: https://www.touchedbycancer.org/
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Welcome to Marrow Masters, Season 4, Caregiving Perspective, Sponsored by the National Bone Marrow Transplant Link, (nbmtLINK), Incyte Corporation and the Leukemia & Lymphoma Society. The National Bone Marrow Transplant Link, established in 1992, strives to help patients caregivers and their families cope with the psychosocial challenges of transplant from diagnosis through survivorship.
In Season 4, join Peggy Burkhard, Executive Director of the nbmtLINK, as she focuses on all things Caregiving. From parents to spouses to siblings, our Caregiver Perspectives are sure to resonate with you. We’ll hear from the experts and the experienced, and their know-how will offer caregivers and families at every stage of the journey best practices, tips and most importantly, hope.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Find the Marrow Masters Podcast and subscribe for free in Apple, Spotify, Google, or wherever you get your podcasts, and for more on the National Bone Marrow Transplant Link, visit nbmtlink.org.
In this season's first episode, we are joined by clinical and health psychologist Michelle Bishop, who specializes in working with cancer patients, survivors, and family caregivers. Michelle spent the first half of her career as a research assistant professor at the University of Florida studying the long-term quality of life of BMT survivors and caregivers, and has been in private practice for the last 11 years.
Michelle likens the BMT journey to a long road trip with many roads and pitstops. There are often unexpected detours as well. On this long BMT road trip, we can’t actually see the final destination and we don’t really know exactly how long it’s going to take so we will need to plan differently and be mindful along the way. For example there is the period of transplant and early recovery at the transplant center, the transition home and ongoing recovery. Keep in mind, with a bone marrow/stem cell transplant, there may be additional roads dealing with graft versus host disease. And it's important to remember that caregivers are on this journey along with their patients.
Michelle encourages caregivers to ask for help and make a list of the things you need help with. And be sure to have friends and family who can support YOU as the caregiver on this road trip. Self care is absolutely essential to keeping your engine running.
For this road trip, you'll want to make sure your tires are full and fluids are topped off before you start.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
When Sharon Minton's husband Rob broke out in a strange rash, his primary doctor thought it might be an allergic reaction to laundry detergent. What it turned out to be was an extraordinarily rare cancer called Sezary Syndrome, an aggressive form of cutaneous T-cell lymphoma. In 2013, he was told he had a 25% chance of surviving the next five years. Sharon shares the importance of being YOUR loved one's advocate, even if you have to speak up and be bold at times.
After researching with doctors and the Sezary Syndrome community, they decided Rob's best hope would be allogeneic stem cell transplant. They got on the registry and found an 8 out of 10 match.
Sharon walks us through the inspiring story of Rob's transplant, hospital stay, and move to an apartment nearby following the transplant. She credits exercise (even walking around the unit), friends and family, and her faith for helping them both survive this ordeal.
There were setbacks along the way, including cytomegalovirus (CMV), sepsis, and even fungal pneumonia. But today, Rob and Sharon are both doing well, with Rob running, fishing, and playing pickleball.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
It's 2011. Imagine being halfway across the world in Africa, doing missionary work, and your daughter gets sick. You are far from modern medicine, and you're told your six-year-old has either mono or leukemia. Then, it turns out she has BOTH.
Next thing Matt DeYoung knew, he, his wife, and all four kids were back in Grand Rapids, Michigan, as Lola battled Pre B Acute Lymphoblastic Leukemia.
While difficult, the initial treatments went well for Lola. Then, in 2013, she was back in treatment after a CNS relapse. In 2015, after yet another relapse, the DeYoungs began to look at the idea of a bone marrow transplant. Without a suitable donor, it took a mismatched cord blood sample to save her life.
In today's episode, Matt speaks about his role as the primary caregiver for Lola. He moved into her hospital room when his job allowed him to work remotely. He was there for the better part of four years, taking detailed notes and making sure he knew every detail of Lola's treatment. Matt found comfort in writing. And he wasn't alone. He also needed to lean on his wife and other children to contribute and sacrifice. And Matt shares the toll this tool on the whole family and the importance of therapy for all.
Matt says you need to stay positive in the caregiver role, even if that means only focusing on 15 minutes or 24 hours at a time. He also talks about the power of his strong faith, and getting peace from the belief that God was powerful enough to bring complete healing if that was His desire. Whenever you get into a situation where you can't control your outcome, you can either choose faith or despair.
Today, Lola is a healthy, happy teenager who has a very special bond with her dad. Her Facebook page, seen here, tells more of their family's incredible journey. (Posted with the family's permission.) https://www.facebook.com/lolafightscancer/
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Barb Hara found herself in the role of caregiver just last year when her sister Jackie was diagnosed with PH positive B cell ALL. Following a transplant, she just celebrated her first "birthday" in September of this year.
As a caregiver to her older sister, Barb took the reigns and started taking notes - lots of them. She tracked every doctor, every treatment, every day. This allowed her to stay on top of all developments and closely monitor Jackie's situation. Organization was key, as this allowed her to send several group text messages to different friends and family.
Barb also talks of the importance of flexibility - situations often change, sometimes without warning. Her husband stepped up with "grandkid" duty when Barb had to stay with Jackie during her recovery. And her other siblings did what they could, filling in as needed and her younger sister was her rock when Barb needed to vent.
Barb found a great (constructive) way to bring family and friends together to help when she created a team for Henry Ford’s Game on Cancer and they all participated in the 2019 Detroit Marathon (5K). Jackie had just been released from the hospital from her stem cell transplant, so a friend stayed with her while the family went to the run.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more information, visit http://hfordh.convio.net/site/TR/Events/GameOnCancer?fr_id=1120&pg=entry
Jackie is doing well today, one year post transplant, and is looking forward to more birthdays, thanks in large part to her younger sister.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Dr. Sung Choi is a pediatric bone marrow transplant physician at Michigan Medicine (University of Michigan).
Dr. Choi joins us today to discuss the unique challenges for both pediatric patients as well as their caregivers. Of course, the approach differs with different ages. You wouldn't treat a 16 year-old the same way you would a toddler.
But there are some constants.
For example, it's important to have quality time with the patient not spent discussing treatment. And often times, kids will take cues from their parents, which is why self care is also important. There's a reason why flight attendants tell you to secure your own mask before your child's.
We discuss the positives and negatives of social media and how that affects younger patients. We also cover the various stages along the transplant journey rollercoaster.
Finally, Dr. Choi shares some inspiring stories a physician following up with former patients.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Today, we are joined by Kate Whitson, who talks about her husband Randy's ALL diagnosis. Randy was 43, and their son was about to turn 5 and go into kindergarten.
Kate discusses the unique challenges of being Randy's caregiver and trying to convey the situation to Max in an age appropriate way. In some ways, they were lucky that Max was too young to fully understand the situation, but they faced the daunting task of Max starting school under unique circumstances.
Kate relied on many family members to help her take care of both Randy and Max throughout this ordeal. They found it helped to normalize things for Max by having Friday Family Movie Night at the hospital, complete with pizza. And you'll love the story of one friend who waited in the lobby for hours just in case Kate needed a listening ear that day-- and she did!
Kate shares the importance of putting your oxygen mask on first, just like they say on a flight. Also, as hard as it may seem, accept help from loved ones and to talk to others who have been in your shoes.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
In 1996, Jim Bulger's wife Nancy was diagnosed with Diffuse Large B-Cell lymphoma. She went into remission after six months of chemo. But over two decades later, in 2017, Nancy received another diagnosis: follicular lymphoma. A later diagnosis showed that this had transformed into Diffuse Large B Cell Lymphoma once again.
One of Jim's roles as a caregiver was to run "interference" - to field calls and other correspondence from friends and family, so Nancy didn't have to keep re-telling the same stories over and over. Jim was also Nancy's advocate with her medical team, tracking every appointment, prescription, treatment, and more.
Jim will talk about letting others help and show their love and kindness--something caregivers sometimes struggle with.
Another key was finding a balance between restriction and freedom as Nancy navigated this journey and slowly built her strength back up. Jim also promised himself that there would be laughter. No matter what, he'd make his Nancy laugh every day. Wait until you hear the story of the meditation CD!
Jim shares what their new normal was like--no predicability, no days off, the significance of the "pause button" and the importance of doing what you need to do now so that you can do what you want to do later. Two other nuggets--celebrate the milestones--no matter how small--and find your "North Star. "
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
When Jean Heika's daughter Shannon was in college in 2013, she got sick. After extensive testing, they learned she had an aggressive, rare leukemia - blastic plasmacytoid dendritic cell neoplasm (BPDCN).
Jean learned a lot over about being a caregiver over the course of Shannon's journey, including how to interact with doctors. As the primary caregiver, you need to be the patient's chief advocate, even if that means pushing back when necessary. Find a doctor that's not afraid to consult with colleagues, one that will go to bat for you as Dr. Ken Holland at Northside in Atlanta did for us.
Jean packed up and moved back across the country to care for her daughter through transplant, and the awful GVHD that followed. There were times when Shannon really suffered, and the doctors' prognosis wasn't good. There were points when even they didn't think Shannon would make it.
But Shannon fought, and so did Jean. She fought every step of the way to make sure they had the best information and best care. She reminds our listeners to accept help when offered, and gives us a fantastic tip about doors in doctors' offices.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Today we have Cathleen S. Graham RN, CHPN, the regional manager for one of the nation's largest hospice organizations and the CEO of CannabisNurse.com. Cathleen is also a partner with Leaf Medic, Michigan's first online vocational school to offer cannabis industry training.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Cathleen suggests you look for unbiased scientific locations to learn more.
Her suggestions include:
Cannabis Nurse.com: https://cannabisnurse.com/
American Cannabis Nurses Association: https://cannabisnurses.org/
Cannabis Nurses Network: https://www.cannabisnursesnetwork.com/
The Society of Cannabis Clinicians: https://www.cannabisclinicians.org/
Dr. Sulak at https://healer.com/
The debilitating medical conditions that qualify an individual for the medical use of marijuana include one or more of the following:
- Cancer
- Glaucoma
- HIV Positive
- AIDS
- Hepatitis C
- Amyotrophic Lateral Sclerosis (ALS)
- Crohn’s Disease
- Agitation of Alzheimer’s Disease
- Nail Patella
- Post - Traumatic Stress Disorder (PTSD)
- Obsessive Compulsive Disorder (OCD)
- Arthritis
- Rheumatoid Arthritis
- Spinal Cord Injury
- Colitis
- Inflammatory Bowel Disease
- Ulcerative Colitis
- Parkinson’s Disease
- Tourette’s Disease
- Autism
- Chronic Pain
- Cerebral Palsy
- A chronic or debilitating disease or medical condition or its treatment that produces 1 or more of the following:
- Cachexia or Wasting Syndrome
- Severe and Chronic Pain
- Severe Nausea
- Seizures (Including but not limited to those characteristic of epilepsy)
- Severe and Persistent Muscle Spasms (Including but not limited to those characteristic of multiple sclerosis)
For every pro there is a possible con. For example, cannabis is said to help manage anxiety or symptoms of PTSD. However, if one takes too much cannabis it can cause anxiety and panic. Also, if one with PTSD obtains a cannabis chemovar that is high in pinene it can cause the symptoms of PTSD to become worse. Cannabis is also known to increase heart rate up to 50%.
A recent study published in Forensic Science International this month declared “After exclusion of other causes of death we assume that the young men experienced fatal cardiovascular complications evoked by smoking cannabis.”
These reports indicate that the need for education is paramount for the safety of the consumer. CBD is a great vasorelaxant and can decrease blood pressure as well as stabilize blood sugar levels. CBD does not activate CB1 receptors in the brain, and is devoid of the psychotropic actions of THC (meaning it will not get you high). Indeed, CBD may antagonize the psychoses associated with THC (meaning CBD decreases the effects of THC).
The difference between cannabis oil and hemp CBD oil is the amount of THC that is allowed. Hemp CBD oil is allowed to have 0.3% THC along with all the other cannabinoids found in that particular plant. Cannabis oil has a lot more THC and very little CBD.
A research study suggests that 96% of cannabis has no CBD in it at all. CBD is found mostly in the Hemp plant. CBD isolate is just that- only the CBD. This isolate does not have any other cannabinoids. CBD is the cannabinoid that has the most medicinal benefit- CBD alone is great at decreasing pain, inflammation, nausea, insomnia, and muscle spasms as well as many other symptoms too. Also, CBD does not show on a drug screen test as they usually only test for THC.
When you use full spectrum cannabis or hemp products you are getting the most medicinal benefit as they all work well to balance each other and create an entourage effect. It is important to remember that if you use a full spectrum hemp oil that you can fail a drug test as these products do have 0.3% THC.
There are both pros and cons to the different methods of administration. Smoking the byproducts can cause serious diseases in a person. Vaping or dabbing can reduce those harmful byproducts by not combusting the product. Inhaling is the fastest way to get cannabis into your body-- it is also the shortest lasting-- meaning you have to use this method a lot more often to feel the medicinal benefits. Note: We caution you that vaping has been determined to be dangerous.
Edibles or Medibles take a lot longer to feel the effects although the effects may last up to 8 hours using this method. When you eat cannabis it is important to remember that the Delta 9 THC converts to 11 Hydroxy THC which is 3-4 times more potent and psycho active than Delta 9 THC. 11 Hydroxy THC passes through the blood brain barrier easier and that is good news for Parkinson’s patients. Sublingual is the easiest to micodose and is often used by the pediatric patients the most. Topical products are not psycho active and work at the site where it is applied.
Medical marijuana may affect the effectiveness of medications taken to control GVHD (tacrolimus, cyclosporine, steroids) as well as anti-depressants and potentially antibiotics and antifungals: What we do know from our knowledge is that it does have some effect on post-transplant medications so there is some effect on mycophenolate, tacrolimus, cyclosporine or steroids so many of the medications a patient might receive post-transplant, these agents may inhibit them and cause increased levels of the drug which may result in toxicity. Also, it can inhibit our antidepressants which would again increase our level of toxicity with those drugs. We can see some potential drug-drug interactions with our antibiotics, as well as our antifungals which many transplant patients will receive. We do worry about these because things like Voriconazole, Posaconazole, any of our azoles. Many of our mycins, erythromycin, clarithromycin, antibiotics may be affected by these.
There are concerns about infection in transplant patients who use marijuana: From an infection standpoint, we do have concerns. Especially with smoking marijuana in our patient population. We have concerns with fungal infections. There are some case reports looking at patients who are smoking marijuana or who have smoked marijuana or who are immunosuppressed post-transplant who have developed severe fungal infections and have died from those fungal infections. That could be a result of mold spores that may be contained in the buds that are smoked, as well it could be a result of increase in inflammation and causing infection risk in the lungs. Again, when we have patients who are immunosuppressed, who have too few white blood cells, we really do advise them NOT to use smoked products. We really advise them to use edibles or tinctures of some other nature.
Microbe contamination of marijuana products is a concern: There's no standard manufacturing, so we worry about microbe contamination just like we would worry about smoking those natural products with mold spores.
Micro contamination, we worry about pesticide contamination from how the crops were raised. With that, in our immunosuppressed patient population this is a real concern because patients can be more susceptible to these types of toxicities. Then there is just an unmonitored chain supply. Again, with FDA approved drugs as they go through quality control - we do monitor where the drugs are and what temperatures they are and when they have been where. In this situation, there really is an unmonitored chain supply so we do not know where there might be potential places for contamination to occur as the product is being prepared for patient use.
Small studies suggest that marijuana may help in control of Graft Versus Host Disease
Please remember: this is an overall, general education. Again, we want to stress that with laws differing so much state to state regarding the use of cannabis or CBD, it is very important you learn the laws for YOUR state. We also are working with what is legal at the time of this recording, in June 2020. Please consult your doctor should you have personal questions or concerns, applicable to your care plan.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Diagnosis: Acute Lymphoblastic Leukemia (ALL).
Merely 45 years old at the time, this wonderful lady has much to share in the past three years! Kelly has had two transplants, the second being a haploidentical transplant, a haplo. Get ready to be inspired.
Note: At the time Kelly recorded this podcast with us in the spring, she was in remission. Since then, she has had a relapse but we are so happy to say she is getting through this next chapter and hoping to make a full recovery.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Strapped in with an amazing support system, James D. Bond, Sr. showed Multiple Myeloma what he was made of many decades ago. GVHD has also taken its toll but James beat that too.
Second opinions, six clinical trials, four bone marrow transplants and a super attitude all played a life-saving role in this happy ending. And we will let James tell you his Patient 007 story!
James also shares the role his loving wife Kathleen has played in his survival and care. In fact, Kathleen developed a cycling fundraising event that soon turned into the Pan Ohio Hope Ride, a 328-mile bike ride over four days that benefits the American Cancer Society Hope Lodge, which provides free lodging for cancer patients and their families. James has participated through the years as well as a rider.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Pan Ohio Hope Ride Website: http://pohr.org/
Now, 28 years later, after being told he would only live three years, this incredible dad, husband and friend is living life to the fullest. On your mark, get set, go!
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Bonus: Jim is happy to share his email here in case anyone would like to contact him; jim.bond48@gmail.com
Roy has a perspective on all of this that is humbling, real and evolving. "I've lost things and I've gained things," Roy shares.
Listen in to learn more about this young man's profound strength, determination and authenticity. Roy reminds us that you can control what you can control, and you can let go of what you can't.
You will find yourself rooting for Roy as you follow his journey as an AYA to a resilient young man willing to share his soul to help others. Roy talks frankly about the benefits of therapy on his journey and compares looking for a therapist to looking for a used car--don't be afraid to look under the hood and shop around for the perfect car for you.
Finally, Roy shares his perspective regarding being your own best advocate--learn the language of your disease and educate yourself. There is so much wisdom shared here from a young man who inspires us immensely.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Jordan "walks the walk and talks the talk." He will first share his amazing donor journey and also tell you all about DKMS and all they do to enhance the patient experience through the donor's gift of life. After all, we would not have life-saving bone marrow/stem cell survivors without donors.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Learn more about the donor experience: https://www.dkms.org/en
Seen in the photo accompanying this podcast is Jordan, sharing a story with a young patient about Sunny the Bear. Sunny the Bear brings comfort to young donors and is one of the many programs that Jordan has designed in his role at DKMS.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Lew Christie is 71 years of age and was diagnosed with Acute Myeloid Leukemia (AML) in December 2012, with a very pessimistic diagnosis. A worker at the scene of 9-11 in NYC in 2001, Lew believes his health issue stemmed from the carcinogens breathed in after that catastrophic tragedy.
Settle in and get ready to be inspired and humbled by the journey of Lew. Lew received two transplants, one from an unrelated donor in spring of 2014. Later that year, he received a haplo transplant from his daughter.
GVHD also plays a significant role in Lew's continuous journey.
Lew is a husband, dad, grandpa and great friend, and he credits his incredible wife's support. He shares his experiences with others through Facebook groups and finds support groups to be very helpful. Lew is a busy guy and you will hear more about all the activities he participates in during in his robust life as a survivor.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
One of Lew's favorite things is walking, Visit the Charity Miles website for more on a great way to get your steps in and give back- https://charitymiles.org/
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
The aim of a clinical trial is to safely, and in a controlled manner, study a brand new therapy, perhaps a drug, new drug combination, targeted therapy or medical device that hasn't been seen before. We might also be testing an already approved drug but for a different indication or disease.
Sometimes a trial is designed to compare a new treatment with a standard treatment to find out which one is more effective or has fewer side effects, or maybe it's just looking at quality of life. Scientists may ask: Is this NEW treatment easier for patients to deal with such as a new pill versus going to an infusion center for an IV infusion? This could be a clinical trial.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more information, on clinical trials, visit LLS's Clinical Trials Support Center: https://www.lls.org/support/information-specialists/clinical-trial-support-center-ctsc
Here you will find a link to the referral form to submit to the Clinical Trial Support Center nurses to start the referral/trial search process at LLS.
You can also speak to one of their Information Resource Center Specialists about many other issues (financial, disease education, diet, etc) and they can help determine if a clinical trial is the right next step and help fill out the referral with you.
Information Resource Center: https://www.lls.org/support/information-specialists/
Phone: 800-955-4572 (M-F 9am to 9pm EST)
Chat live online (M-F 10am – 7pm ET) or email with any other questions: infocenter@lls.org.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK website: https://www.nbmtlink.org/
Pam was the eighth patient to be enrolled in a clinical trial at Northwestern Medicine and is in full remission.
Today, Pam volunteers as a peer support mentor for Imerman Angels and helps non-profits like ours by sharing her personal experience today.
This podcast will inspire anyone who has questions about CAR-T and/or Clinical Trials. The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Be sure to also listen to Episode 2, devoted to Clinical Trials.
For more on Imerman Angels, visit https://imermanangels.org/
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Please note that the information that was available at that time is reflected in this podcast. As well, more than 50 cancer related COVID-19 questions were asked in advance, which were incorporated into the presentation and about 10 more were answered live on the call, all relevant to staying well physically and mentally (coping) during this unprecedented time.
For more information, visit www.nbmtlink.org or LIKE us on Facebook. We post regularly and responsibly. If you would like to ask Jennifer, our licensed staff social worker a question or request a peer support mentor. feel fee to reach out to Jen at her email, jennifergillette@nbmtlink.org.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Be well, stay home as much as possible. You've got this.
A few reputable sites for more on COVID-19
https://www.cdc.gov/cancer/survivors/staying-well-at-home.htm?deliveryName=USCDC_9_13-DM24142
https://www.who.int/emergencies/diseases/novel-coronavirus-2019
Once restrictions are lifted, it is still best to live differently for now such as;
Do not allow anyone in your home if you or they show any signs of illness.
Avoid travel.
Avoid crowds and large gatherings.
Wear masks, wash hands, and use social distance.
Avoid touchscreens.
Discard masks if wet or dirty.
Do not touch your face.
Do anything remotely that you can.
Make sure caregivers take precautions.
Talk to your doctor about his or her recommendations.
Be compliant with your medications and treatments.
Avoid smoking.
Eat healthy, sleep, and exercise. Increase protein.
Use your faith
Limit stress. Stress ramps up inflammation which makes you more susceptible.
Do not isolate fully. Reach out in safe ways.
Get information from only reputable resources and limit social media.
If you are concerned about returning to work, talk to your doctor about your concerns and ask your employer for accommodation.
Stay informed as we are learning new information every day.
This special Lunch & Learn originally aired on Thursday, April 2, 2020. Pleae note that the information that was available at that time is reflected in this podcast. As well, more than 40 cancer related COVID-19 questions were asked in advance, which were incorporated into the presentation and about 10-15 more were answered live on the call, all relevant to staying well physically and mentally (coping) during this unprecedented time.
For more information, visit www.nbmtlink.org or LIKE us on Facebook. We post regularly and responsibly. If you would like to ask Jennifer, our licensed staff social worker a question or request a peer support mentor. feel fee to reach out to Jen at her email, jennifergillette@nbmtlink.org.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Be well, stay home. You've got this.
A few reputable sites for more on COVID-1.
https://www.cdc.gov/cancer/survivors/staying-well-at-home.htm?deliveryName=USCDC_9_13-DM24142
https://www.who.int/emergencies/diseases/novel-coronavirus-2019
Special thanks to our generous sponsors: The Leukemia & Lymphoma Society, Jazz Pharmaceuticals, Incyte Corporation, Pharmacyclics & Janssen and our esteemed Link Partners.
What is your definition of love? Feelings of happiness with each other? Feelings can be like waves though; they come and go. Therefore, love in the feeling sense is not enough.
Love trust, respect, communication, fun and a sense of spirituality are the foundation blocks for a healthy marriage. Each is like a spoke of a wheel, if one is down the other wobble as well.
In addition to these normal relationship tasks, cancer patients are further stressed with role changes, intense and life altering transitions in all aspects of their lives, financial strains, and the list could go on.
Going through a cancer or transplant journey in life amplify cracks in a relationship. How we deal with these cracks can either draw people closer than they have ever been or can be the final blow to a relationship.
Listen in for tips sure to help all relationships.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Some additional resources:
Own Your Cancer- A Take Charge Guide for Recently Diagnosed and Those Who Love Them Dr. Peter S. Edelstein
The New Rules of Marriage by Terrence Real, LCSW
MoreCommunication Tools are available through
Be the Match,
American Association for Marriage and Family Therapy,
Survivor Network
Cancer Care
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
This episode features Anna DeSalvo, MS, CGC, who is a Patient Education Specialist with the Jason Carter Clinical Trials Program (JCCTP) operated by Be The Match. In addition to keeping the JCCTP clinical trial search tool up-to-date and creating educational content, Anna regularly assists patients in any part of the clinical trial search process.
Time to bust another myth, and maybe save some lives. Did you know that by the time a treatment gets to the point where it’s a clinical trial being offered for humans, a lot of testing has already been done? There are multiple pre-clinical tests that are done in labs and often in animal models to be as sure as possible that they will be safe in humans.
In fact, clinical trial doctors and staff watch patients very closely. Patients’ safety is their number one priority. Any reactions to medication are documented very thoroughly and appropriate follow-up is taken. Some patients have reported that they felt like they had even better care in a clinical trial than standard care because of this extra attention to detail.
Many clinical trials are not looking at brand new treatments. Rather, they are looking at ways to improve existing treatments. There are serious risks and side effects associated with blood or marrow transplants, so many researchers are looking at ways to make them safer and more effective.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
Palliative care does not mean hospice: it is illness treatment and it improves function. Join Shirley Otis-Green, an expert in this subject as she shares her wealth of knowledge and a plethora of resources.
This is so important for people to understand. Quality of life is affected greatly for the better when patients and their families understand palliative care and its true purpose. A national expert, Dr. Otis-Green is quite frankly an incredible resource.
Great organization to check out: The Center to Advance Palliative Care, a national organization dedicated to increasing the availability of quality health care for people living with a serious illness.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Several Books Shirley Otis-Green references:
- Being Mortal: Medicine and What Matters in the End,- Atul Gawande
- A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death, - BJ Miller and Shoshana Berger
- When the Focus is On Care: Palliative Care and Cancer - Kathleen Foley with the American Cancer Society
- The Human Side of Cancer: Living with Hope, Coping with Uncertainty - Jimmie C. Holland and Sheldon Lewis
- The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life - Ira Byock
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
This episode will set the record straight regarding cGVHD. Most cases will subside in 3-5 years. You won't want to miss this one from one of the world's leading experts on cGVHD.
Dr. Steve Pavletic is an incredible resource for folks with cGVHD. Dr. Pavletic leads a chronic GVHD clinic and natural history study at the National Institutes of Health. Learn more about cGVHD, treatment updates, and his incredible opportunity for those who qualify.
Dr. Pavletic will also speak about steroids, the love/hate relationship many experience with them, and much more.
Did you know that some cGVHD is actually good? You will want to hear more about this too.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268. The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
This episode features Dr. Effie Petersdorf, a member of the Clinical Research Division, Fred Hutchinson Cancer Research Center; Professor, Division of Oncology and Department of Medicine, University of Washington School of Medicine, and Attending Physician, Seattle Cancer Care Alliance.
This episode will focus on the many transplant options available to people, whether it is a family member or a non-family member. Listeners will learn more about how this all works. It will give hope to so many in need of a transplant.
This one covers it all!
- HLA tissue types explained
- Learn about the success rate as it related to how common the patient's HLA tissue type.
- Learn about 10 out of 10 matches; 9 out of 10 matches, etc.
- Haplo transplant explained
- Cord blood transplant covered at length
- A poignant (unmatched) patient story sure to give hope
- A cord blood transplant involves shipping the frozen units to the transplant center when the patient is ready to receive them.
- Major advances in related donor, unrelated donor and cord blood transplantation have occurred throughout the past several decades, and have significantly improved the chances for patients to receive life-saving therapy for blood disorders.
- If a patient does not have a match in the family, there are 3 sources of stem cells for transplantation these days: mismatched family members, unrelated donors, and cord blood units.
- Many resources available including: Be The Match and the World Marrow Donor Association websites.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268. The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
Time to bust another myth regarding age and transplant. Listeners will be relieved to hear about older patients receiving life-saving transplants and most often thriving post-transplant.
The likelihood of being diagnosed with a hematologic malignancy (blood cancers: most leukemias, lymphoma, multiple myeloma, etc.) increases substantially above the age of 60.
In the past (more than 20 years ago), blood stem cell transplantation was mostly available to younger patients. However, that is NOT the case today.
Reduced-intensity transplants (developed in the 90's) have allowed treatment of older and/or medically infirm patients. The focus is more on the immunologic graft-vs-tumor effect than on high-dose upfront therapy.
This episode features Dr. Marco Mielcarek, a medical oncologist who is specialized in blood and marrow transplantation. He is a professor of medicine at the University of Washington and the Medical Director of the Adult Blood and Marrow Transplant program at Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance.
Dr. Marco explains autologous vs allogeneic transplant concept (patient’s own stem cell vs. cell from a donor --i.e. sibling or unrelated or other)
At SCCA, Dr. Marco explains, over the last 20 years, the median age of our transplants patients has increased by 13 years (currently: median age, 58 years). This means that half of our patients are older than 58. The oldest patient transplanted recently was 81 years old.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
This episode will focus on CAR T-cell Therapy.
Dr. H. Kent Holland, is board certified in the subspecialties of oncology and hematology. He is Medical Director of the Blood and Marrow Transplant Program at Northside Hospital and Co-Director of the Northside Hospital Stem Cell Processing Laboratory. Dr. Holland is also a Northside Hospital Leukemia Program physician. An expert on this topic, Dr. Holland will share how it works, who is eligible, and much more.
CAR T-cell Therapy is a game changer. Listen to learn more about this therapy and the many patients who will qualify. Many who may have very few options after relapsing from remission are learning that CAR T-cell Therapy is life-saving, targeted cellular therapy.
Get ready to be educated, inspired and much more as we bust this myth and many others throughout this series.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
Whether it's CAR -T questions, a need for a better understanding of clinical trials, cGVHD concerns, relationship/love issues, donor/age options or the truth on palliative care, we got you covered. Our interviews with the nation's leading doctors, social workers, and health care professionals will feature advice and expertise sure to help Bust Marrow Myths!
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed Link Partners.
• Thriving to find the best version of you after transplant
• Find ways to reconnect with the world around you
• It is not easy: it can be a slow process, your personal earthquake
• Increased tolerance for the unknown
• Exhaustion
• Losses along the way
• Patience is important: a marathon not a sprint
• Look for ways to be even just a little bit stronger each day
• Energy issues
• Chemotherapy
• Your support system
• Emotional aspects including depression
• Fatigue examined: what time of the day is best for you and your energy level.
• Chemo brain: make lists, etc.
• Delegate
• Exercise, diet, nutrition and vitamins
• Light Therapy/Fatigue: Click here for our program on Fatigue
• Reprioritize your day
• Avoid naps if possible
• Caffeine tips
• You can control how you handle what is affecting you.
• Focus on the positive
•You are a blessing to so many
• Mark your progress: healing is happening
• Reclaim what you can
• Have a life list and/or a gratitude list and keep adding to the list
• Express yourself, communicate: Caringbridge.org
• Get out of the house when you can
• Find your passion
• Lunch & Learns: Click here for relevant topics!
• Caregivers Thriving: Secondary Survivors: Click here for our book on caregiving.
• Use “I” Statements
• Treat yourself good!
• Persistence, patience and hope. You got this!
• Diagnosed when 20 years old, Sharde has had many issues with cGVHD
• Sharde shares her coping mechanisms, tips and challenges
• Fatigue and pacing yourself
• How Sharde is living life to the fullest even with cGVHD.
• Importance of seeing a specialized doctor when you are not sure if it is cGVHD.
• Sharde’s incredible mom, caregiver/support system
• Remembering how far she has come and living life in the present day.
• How Sharde has accepted that this is where I am and I am alive.
• Would Sharde have the transplant again, knowing all that she knows? Tune in and find out. You will be inspired.
• Viki’s presentation will cover the following organ systems re: cGVHD.
Skin, Fingernails:
• If you do not feel greasy from the lotions you apply, you are not using enough!
• Fun facts about the sun—we all need some!
• You did not go through a transplant to sit at home in the house—just do not burn. A sunburn is your enemy.
• Fingernail care: keep them filed and avoid gels nail polishes
• Steroids and bruising—what to look for
• Fish oil explained
Joints:
• Edema GVHD explained
• Cramps: this is what you need!
• Stretching and Acupuncture: try gentle yoga and gentle message Eyes:
• Eyes Need Lubrication
• Preservative free single use tears/eye drops
• Steroid eye drops: consult with your ophthalmologist
• Scleral Lenses discussed: grant available through your doctor
Bone Mass:
• Osteopenia and osteoporosis discussed
• Bone density scans
• Importance of weight bearing exercise
• IV preps explained
Mouth:
• Dry mouth and certain candy to try
• Biofeedback helpful too
• Does your toothpaste burn? Try children’s toothpaste. Here’s why!
Lips: Steroid ointment might be an option
• Steroids: oral antifungals
• Visit your dentist
• Trouble swallowing? Listen up
Lungs and Sinusitis
• Short of breath? Importance of catching lung cGVHD issues asap
• Importance of promoting lung function—go take a walk
• Medical Marijuana – Prescription please!
GI Issues
• Is it GVHD?
• Correct diagnosis is so important
• Wasting syndrome/protein loss
• Food Diary Tips
Female and Male Issues
• GYN exams, early menopause and vaginal dryness
• Males: impotence, decreased testosterone and lesions
Mood Changes and Fatigue
• Steroids and their role
• Adrenal glands explained
• Suicide
• Depression
• Get your thyroid checked
• Anti-Depressants can help
• It’s okay to feel depressed
• Resources and more resources: www.nbmtlink.org
• Talk about it!
• I’m Home: What do I do now regarding seeing a doctor.
• Be your own advocate
• Notice the little things, over report symptoms to your center
• Forever fatigue covered: (Learn more about Light Therapy by visiting
• Your New Normal: Check out the LINK's award winning DVD.
• Finding your way: new crossroads
• Embrace living
• The painfulness of cGVHD discussed
• Photopheresis, ECP: Click here for more on photophersis
• Your caregiver: the forgotten one
• Meditation and mindfulness
• Depression and anxiety covered
• Fear of getting cGVHD: Education is key
• Even after all I have seen, yes, I would get a transplant!
• Did you know more and more older people getting transplanted today?
• Medications/options and steroids
• First treatment: steroids and its side effects- muscle weakness, diabetes, etc.
• What is on the horizon: treatment options explained
• Extracorporeal photopheresis (ECP), a cutting-edge, nonsurgical procedure to treat graft-versus-host disease explained. Click here for more on ECP (Photophersis)
• Various drugs discussed and their relationship to steroid use
• Clinical Trials discussed: Important and used as upfront therapy: Click here for more re: Jason Carter Clinical Trials
• Research as it relates to better treatments through clinical trials
• Great information on a NIH free clinic on cGVHD. Click here for the link.
• Definition of acute and chronic Graft Versus Host Disease (GVHD)
• Examples of organs affected by both acute and chronic GVHD
• Organs covered from head to toe
• Fatigue
• Your risk of getting cGVHD
• Importance of staying in touch with your transplant center
Click here to visit the Karmanos Cancer Center
• Resources available through the nbmtLINK
The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship. We provide vital information through valuable resource books, distributed nationally through our partnering cancer (transplant) centers. Many of our resources are also available on-line. We provide specialized and personalized support services as well. The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Additional Resources:
Tap the phone number to call the National Bone Marrow Transplant Link at 800-546-5268
NBMT Link Website
NBMT Link on Facebook
NBMT Link on Twitter