AAMDSIF Podcasts for Patients: Recent Episodes
The Aplastic Anemia and MDS International Foundation
"Podcasts for Patients" from the Aplastic Anemia and MDS International Foundation.
For more, see our podcast page at: https://www.aamds.org/podcast/
Dr. Salrotra explains how Tregzi works for patients who are undergoing a stem cell transplant or a bone marrow transplant.
Listen to Barry describe the diagnosis, watch-and-wait, treatment, and survivorship for MDS, or Myelodysplastic Syndromes
Learn from Dr. Richard Childs, RADM, as he explains the FDA approval of Omnisirge for treating patients with Severe Aplastic Anemia, or SAA.
Claire was a NICU nurse, so she had never experienced a pattient with Aplastic Anemia. Then, she became a patient herself.Find out how she learned she was stronger than she knew in this episode.
When Donna picked up a Hope Stone at her first AAMDSIF Patient and Family Conference, she couldn't foresee that she would be carrying it in her pocket on all challenging days.Listen here as Donna shares how she found hope while dealing with MDS, or Myelodysplastic Syndromes.For more content like this, please follow the AAMDSIF Podcast for Patients on Soundcloud, Apple Podcasts, Google Play, Spotify, or the website: https://www.aamds.org/education/podcast-episodes
As an active, working, mom, Shaquilla was used to being busy, and enjoying all the activities that come with children.Then she started getting tired. She wasn't just tired; she couldn't keep up with the daily routine anymore. The visits to the doctor didn't solve the problem.When the diagnosis of PNH finally came, it wasn't any less confusing.Find out how Shaquilla became her own best advocate in her health care, and how she remains resilient in this Podcast for Patients episode.
Pain. Blood Clots.Diagnosis.Listen to Shane describe his journey to diagnosis, then to ongoing, successful, treatment in this recent episode. He will inspire you to advocate for yourself, and to keep focused on your needs.To listen to more podcast episodes, please subscribe on Apple Podcasts, Google Play, SoundCloud, Spotify, or listen on the AAMDSIF website here: https://www.aamds.org/education/podcast-episodes.
Dr. Satheesh Chonat describes the use of this medication for pediatric patients with PNH, or paroxysmal nocturnal hemoglobinuria.For more podcast episodes like this, please visit aamds.org/podcast (https://www.aamds.org/education/podcast-episodes).
Dr. Carlos De Castro describes the use of this medication for patients with PNH. Listen now.For more podcast episodes like this, please visit aamds.org/podcast-episodes (https://www.aamds.org/education/podcast-episodes)
This new therapy is designed for patients with Low-Risk MDS. Dr Shallis explains which patients may see help for their anemia with this treatment as well as manageable side effects.
Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria
Damian describes his story of diagnosis, treatment, and bone marrow transplant in this compelling episode.
Director for Patient Services, Leigh Clark, interviews Ron Duncan about his journey with Pure Red Cell Aphasia, or PRCA.
Dr. Roma Rajput explains the origins and treatment of hepatitis-associated Aplastic Anemia in this AAMDSIF Podcast for Patients Episode.
AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his myelodysplastic syndromes, or MDS, patient journey.
AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey with Aplastic Anemia. The conversation includes treatment and survivorship.
Evan was biking 20 miles each day, when his dad noticed physical changes. The diagnosis: PNH, or paroxysmal nocturnal hemoglobinuria. Listen to Evan describe his journey with this rare disease in this episode of Podcast for Patients.
Dr. Bart Scott explains how the approval for the oral medication, Fabhalta, or iptacopan, may be beneficial for particular patients with PNH
Discussion about recent FDA approval of Tibsovo with Dr. Amir Fathi, who is an associate professor of medicine at Harvard Medical School and the director of the leukemia program at Massachusetts General Hospital.
Dr. Guillermo Garcia Manero explains the new authorization for use of the drug, Reblozyl®.
Attorney Christopher Mills explains to patients the rights and responsibilities of The Americans with Disabilities Act.
Learn about your responsibilities and rights under the federal Family Medical Leave Act with attorney, Christopher Mills.
Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. He also shares his own perspective about asking for a second opinion, recommending that patients do select this option.#MDS #aplasticanemia #bonemarrowfailure #bloodcancer
What is "chemo brain" and how is it managed? Listen to this recording to discover the best approaches to dealing with this common side effect, with Dr. Jorg Dietrich
Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.
When should patients be vaccinated, and with which version? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.
What is a clinical trial? When should a patient consider participating? Olga Rios, RN, at the NHLBI at the National Institutes of Health, answers these questions.
Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue. Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.
What is Intermediate-Risk MDS, or Myelodysplastic Syndromes? Learn about this diagnosis with expert Dr. Swapna Thota in this recording.
Dr. Joshua Zeidner explains why it is critical for patients with MDS to receive an accurate diagnosis. He describes the steps to determine the presence of the disease, and also discusses some of the treatments available.#myelodysplasticsyndromes
Dr. Timothy Pardee discusses treatments for AML, or Acute Myeloid Leukemia, occurring in older adults.
Dr. Norkin explains why and how patients with PNH can develop blood clots, as well as prevention and treatment.
Treating PNH, or paroxysmal nocturnal hemoglobinuria, continues to evolve. Learn about the latest treatments with Dr. Allysono Pishko here.
Older adults may have the option for a bone marrow transplant, depending on a number of factors. Listen to Dr. Nandita Khera here to learn more.
Dr. Amer Zeidan from Yale School of Medicine explains the uses, benefits, and risks of the newly approved treatment, Inqovi.
Dr. Eunice Wang explains the origin and treatment of secondary MDS. Dr. Wang is the Chief of the Leukemia Service at Roswell Park Comprehensive Center.
Dr. David Steensma discusses MDS and toxins with Leigh Clark, Patient Educator. Dr. Steensma is an associate professor at Harvard Medical School and faculty member in the leukemia program at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, Massachusetts and the Edward P. Evans Chair in MDS at Dana-Farber Cancer Institute
Dr. Abdulraheem Yacoub talks with Leigh Clark about MDS-MPNs overlap. He includes how molecular testing is used in determining treatment options. He also discusses the newly approved drug, Luspatercept, for the treatment of MDS and MDS-MPN overlap syndromes.
During COVID-19, the PAN Foundation is giving grants to certain AML and CML patients. Listen to this broadcast to learn the details.
Discussion of the recent approval of Luspatercept with Doctor Amit Verma, Director of the Division of Hematologic Malignancies and a Professor of Oncology at the Albert Einstein College of Medicine in New York City. #MDS #treatingMDS
Dr. Gustavo Rivero describes strategies for management of Low-Risk MDS, or Myelodysplastic Syndromes. He details supportive care for these patients, including transfusions and iron overload therapies.
Dr Vu Duong explains risk classifications for MDS. He dives into IPSS and IPSS-R scores, focused on helping patients to understand the meanings of high-risk and low-risk MDS.
Julie Lowe, AAMDSIF Director for Strategic Initiatives, anticipates your questions about getting involved with the Aplastic Anemia and MDS International Foundation in this recent interview.
Dr. Tiffany Tanaka from the University of California, San Diego explains the development of High-Risk MDS into AML. She talks about new diagnostic and treatment regimens for these patients.
MDS: Eliot shares his journey of diagnosis, treatment, transplant, and clinical trial for MDS with IDH1 and IDH2 mutations and AML. Myelodysplastic Syndromes, Acute Myeloid Leukemia, bone marrow transplant
Dr. Ehab Atallah describes advances in bone marrow transplant to treat MDS, Myelodysplastic Syndromes, in older patients.
Thomas was too young for MDS, typically. His mom, Terri, describes diagnosis, treatment, and survivorship for him here. #myelodysplasticSyndromes #myelodysplasia #BoneMarrowFailure
Three generations of MDS, and Leigh Ann is stuck in the middle! Discover not only how she and her son are surviving, but also how far clinical research has advanced since her mother's disease here.
Leticia stays active and happy after conquered aplastic anemia was followed by MDS, or Myelodysplastic Syndromes. Discover how she does it here!
Why would I choose a clinical trial? What kind of additional care would I receive? How do I know if I qualify? Christina Cline, RN, BSN, CCRC explains both patient and nurse navigator roles in this recent recording.
Mark had no symptoms prior to diagnosis. Even more surprising was the "watch and wait" treatment plan! Listen to this recently recorded episode where Mark describes living as an MDS survivor now.
Brian's surprise MDS diagnosis leads to an unsettling strategy: watch and wait! Listen to him describe how he makes the most from the long-term waiting with low-risk MDS in this conversation with AAMDSIF.
Dr. Kogan, Medical Director of the GW Center for Integrative Medicine, discusses incorporating Integrative Medicine into a patient's treatment plan. He describes using yoga, meditation, and other techniques to help patients while they are in treatment for bone marrow failure conditions.
New marrow: SCT, BMT, and GvHD with Dr. Corey Cutler, Medical Director, Stem Cell Transplantation Program at Dana Farber Cancer Institute. Learn all about the risks, benefits, and side effects of the transplantation process in this recent recording.
Hedgehog Pathway Inhibitors, Vitamin C, and MDS: what you need to know, featuring Dr. Raoul Tibes of Perlmutter Cancer Center at NYU Langone.
Thirteenth episode of the AAMDSIF podcast. Imagine being ready to launch your career, then being thrown off course by both aplastic anemia and PNH, all at once! Listen to Sarah's story of her path to survivorship here.
Twelfth episode of the AAMDSIF podcast. 30 years ago, Norma was diagnosed with aplastic anemia, followed by MDS. How did she make it? Discover this great story in her own words!
Eleventh episode of the AAMDSIF podcast. Kat hears patients ask: "I have this bone marrow failure problem again, how is this going to affect me and loved ones? What does this mean for my life?" Discover how Kat helps walk patients through diagnosis, treatment, and survivorship.
Tenth episode of the AAMDSIF podcast. From a sunny, lively retirement to MDS then AML? That was Shirley's life! After treatment in a Clinical Trial, she is successfully in remission, still playing accordion! This is her story.
Ninth episode of the AAMDSIF podcast. Can sleep affect your treatment for bone marrow failure diseases? Dr. Asefa Mekonnen explains why sleep is important for patients as well as when to tell your doctor that you aren't sleeping well. Check this out!
Eighth episode of the AAMDSIF podcast.
So many decisions! Nancy Corbitt, nurse navigator, coaches us through the decision-making process for bone marrow failure as well as how to deal with side effects of medications.
Seventh episode of the AAMDSIF podcast.
Patrice led the charge in her treatment for aplastic anemia, followed by bone marrow transplant. Discover how she made not just surviving but thriving her own goal here!
Fifth episode of the AAMDSIF podcast. “Three hours after they drew my blood, my doctor called to tell me to go immediately to the emergency room!” Because Kirollos was a pharmacy student, he understood that having such low blood counts needed fast treatment, but he was still surprised. Discover how he progressed from diagnosis to transplant to survivorship quickly here.
Bonus episode. Conversation with Robert Burleson, Communications Manager: Eight years and 100 interviews later, here's what I've learned from patients.
Forth episode of the AAMDSIF podcast. "Never give up!" That's Brandi's advice to patients. Her diagnosis was months in coming, and then more time to find the best allogenic donor for her transplant---over 19 months in the hospital between diagnosis and successful transplant.
Third episode of the AAMDSIF podcast. Bunny has PNH, but is living the survivor's life! Joe, her dear husband, has been her caregiver since the illness began. Listen to how they are sharing the journey here.
Second episode of the AAMDSIF podcast. Senior Director of Health Professional Programs, Alice Houk, describes how your health care team can become your Partner toward health in this interview.
First episode of the new AAMDSIF podcast. Our patients, families, and caregivers have been asking us for more ways to learn about rare blood cancers and bone marrow failure diseases. So, we're coming to you today, thanks to generous support from individual donors and our corporate partners, including Celgene.
Today's episode is all about how we at AAMDSIF can help you when you or someone in your life is first diagnosed. Future podcasts will talk about everything from what it's like to have a stem cell transplant as a patient, and how researchers actually dream up new medications to treat those complicated diseases. First, I'd like to introduce Robert Burleson, who does the interviews for AAMDSIF, and Leigh Clark, our patient educator.