The Eye Believe Podcast: Recent Episodes
A Cure In Sight
Join A Cure in Sight host, Danet Peterson, as well as 3 other omies for "Enucleation 101," part 1 of a 2 part episode release covering the varying experiences of enucleation of 4 patients, their tips for recovery, as well as their insights on the process as a whole.
Discussion of the prosthetic eye is not covered but we have plans to cover an ocularist and a panel of adjusting to the experience of having a prosthetic eye.
Panelists featured:
Clay Butler (primary enucleation)
Wendy Carpenter (enucleation after recurrence)
Danet Peterson (host) (enucleation after eye deterioration)
Alison Benjamin (primary enucleation)
ANNOUNCEMENTS:Head to our site to register for a 5K Lookin’ for a Cure near you!www.lookinforacure.org
Swing for Sight April 22, 2023REGISTER for SWING FOR SIGHT TODAY: Subscribe to the newsletter to stay in the knowNewsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Anne Osborn demonstrates and teaches the "how to" behind meditation, and offers a variety of meditation tools to add to your toolbox for "taming your lizard brain" and why this is important in navigating an ocular melanoma diagnosis.
Join for a discussion on various levels of spirituality and how we make meaning of the circumstances in our lives.
Kathy Doocy and Wendy Carpenter will discuss turning their talents into healing, and how they refused to allow ocular melanoma to limit their ability to practice their talents.
A Cure in Sight is joined by omie, Kathy Doocy, co-author of The Happy Cookbook, The Simply Happy Cookbook, and The Happy in a Hurry Cookbook.
Kathy Doocy was previously the host of ESPN's Sidelines and worked at NBC. WHen Kathy and Steve got married and the kids came along, Kathy retired from her TV work to raise the family and preside as the Doocy family CEO and CFO, and she's enjoyed every single minute of it.
Steve and Kathy have Three grown children who moved out and now miss their parent's delicious home-cooked meals every day. they live in New Jersey.
Regarding the Happy Cookbook:
"The year before we started this project, Kathy was diagnosed with ocular melanoma, an unbelievably rare and aggressive form of eye cancer. She was lucky that they caught it early and she was treated by Dr. Carol Shields and her team of specialists at the Wills Eye Hospital in Philadelphia. during her very first examination, Dr. Shields told Kathy, "I am going to save your life," and she did.
During her recovery, while taking stock of her life as many do when they've gone through something that life-changing, Kathy vowed to make it her personal quest to leave her children a written record of the foods they grew up loving. They don't cook much now, but they will someday.
This will always be a part of Kathy's legacy to Peter, Mary, and Sally, that whereever they travel in their lives, they'll always have a printed road map to their mom's signature suppers, provided they will actually cook and not order takeout on Uber Eats."
ANNOUNCEMENTS:Steps for Sight donations are still being gathered–share to help us fund research!www.charityfootprints.com/SFSHead to our site to register for a 5K Lookin’ for a Cure near you!www.lookinforacure.org
Subscribe to the newsletter to stay in the knowNewsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Join Danet, the Eye Believe Podcast Host, to discuss unrealistic timelines in a cancer diagnosis. Can you relate!? Make sure to share this episode with another omie today, and if you’re able, make a small donation to keep our podcast going!
ANNOUNCEMENTS:Steps for Sight Registration is open! It’s not to late to join us this month!www.charityfootprints.com/SFSEye on Mental Health 2023 is now open for registration! Head to the site below to register!
Register at https://tinyurl.com/eyeonmentalhealth23
Subscribe to the newsletter to stay in the knowNewsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined for a webinar titled: A Living Library for Uveal Melanoma with Dr. Lauren Dalvin, M.D.
"Uveal melanoma is the most common intraocular cancer in adults. Despite successful treatment of the eye tumor, up to 50% of patients with uveal melanoma will eventually develop metastatic disease. Unfortunately, there are limited effective treatment options once this cancer has spread. Thus, there is an urgent need for new, personalized therapies to improve survival for patients with uveal melanoma.
We have addressed a major barrier to uveal melanoma research, a lack of representative human disease models, by creating a unique biobank of patient-derived organoids. Organoids are three-dimensional models which simulate cancer behavior in the laboratory and can be used to study cancer biology and response to treatment. In both patients and in our laboratory, we find that each melanoma is unique. Using the collection of organoids in our lab, we will be able to study unique molecular signatures and identify personalized treatments for this cancer. Today we’ll talk about how we created these tiny tumor models and show you what it looks like to grow uveal melanoma in the lab."
Dr. Lauren A. Dalvin is a full-time Ocular Oncologist and Associate Professor of Ophthalmology with a joint appointment in Medical Oncology at Mayo Clinic, Rochester, MN.
ANNOUNCEMENTS:Steps for Sight Registration is open! It’s not to late to join us this month!www.charityfootprints.com/SFSEye on Mental Health 2023 is now open for registration! Head to the site below to register!
Register at https://tinyurl.com/eyeonmentalhealth23
Subscribe to the newsletter to stay in the knowNewsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
The Eye Believe Podcast host, Danet Peterson, shares tips for navigating triggering dates throughout your diagnosis.
ANNOUNCEMENTS:Steps for Sight Registration is open! It’s not to late to join us this month!www.charityfootprints.com/SFSEye on Mental Health 2023 is now open for registration! Head to the site below to register!
Register at https://tinyurl.com/eyeonmentalhealth23
Subscribe to the newsletter to stay in the knowNewsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Reagan Lambert, an omie hailing from Horseshoe Bay, Texas, who was diagnosed in October 2016 with choroidal melanoma. He shares some incredible insights on making meaning during this diagnosis, as well as how his faith in god to come allows him to live fully.
“In October of 2016, I made an appointment with my Optometrist to check flashes I was experiencing in my right eye. After the exam, he said it looked like I had a retina tear. He wanted to make sure, so he sent me to a retina specialist in Austin Texas for additional tests. After a few tests, they determined that I could possibly have an eye tumor, but they wanted to send me to another of their offices for further testing with more specialized equipment.
It was then determined that I had a Choroidal Melanoma. I had heard of and actually had a skin melanoma on my back but had never heard of this kind of cancer. They told me what needed to be done and what the procedure would be. They said that they could do the procedure. I asked them how many they had done? I would be their first. That set in motion my search for the person to do the procedure. After some really cool things fell into place, we ended up in Philadelphia.”Tune in to hear more!
ANNOUNCEMENTS:Steps for Sight Registration is now open! Join us this month to take steps for ocular melanoma and raise over 100K for research! Start your team today--it's not too late!www.charityfootprints.com/SFS! Subscribe to the newsletter to stay in the know!Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
STEPS FOR SIGHT 2023 is now open!www.charityfootprints.com/SFS is where to go to get started!Tune in for what the movement is about, and how you can get involved!Our challenge to you? Register! And then call or text at LEAST one other OM friend to encourage them to join your team or create their own!Grab your friends and Family and let’s walk towards a cure for Ocular Melanoma! We are challenging you to join individuals from around the world by taking 7,000 steps every day in the month of January, with each step representing the 7,000 Ocular Melanoma patients that are diagnosed yearly worldwide. Walk with us not only for a healthier start to your new year, but also for progress in Ocular Melanoma research! Currently there is no cure, but with your help, we could move closer to finding one. As you participate in Steps for Sight, every step you take will get us closer to funding the critical research needed for a cure.
A Cure In Sight is partnering with the Melanoma Research Alliance (MRA) in 2023, to maximize the benefits from the funds raised. The money we raised last year will be matched by MRA to fund a 2-year research grant for Ocular Melanoma. Grant proposals have been received and are currently undergoing the MRA’s meticulous grant review process. Once proposals have been approved, A Cure In Sight will work with MRA to jointly issue the grant award and make the announcement in Spring 2023. This year with your help, we can fund another actionable research project exclusively for Ocular Melanoma
ANNOUNCEMENTS:Steps for Sight Registration is open!
Register at www.charityfootprints.com/SFS
Give the gift of YOUR unique OM story by joining the INSIGHT Registry today and completing your first survey! Head to insight.iamrare.org to get started or continue your surveys!
Subscribe to the newsletter to stay in the know!Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Greg Hobbs, aka the one-eyed fly guy. He is a renowned disc golfer who has refused to let being one-eyed hold him back from playing the game he loves, while sharing about OM in the process!
Here’s a little of Greg’s story—we’re excited to chat with him this next week!
“July 17, 2013 I noticed my vision was a little weird. I went to my eye doctor on Thursday and he sent me to a specialist on Friday. He saw it and said he wanted it out that day. I wanted a second opinion.
I went to the second opinion on Monday and he said the 1st doctor was correct. So I went to a surgeon on Tuesday, talked with them and got the surgery for eye removal on Wednesday.
I got the results after the eye was sent off to the laboratory that it was a stage 4. I was lucky everything worked out for me.
Today, I'm 9 years cancer free.”
Tune in and don’t forget to subscribe, share, and donate below if you can to keep our podcast going!
ANNOUNCEMENTS:Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
2 part session: Join the following three physicians as they discuss new advances in treatment of uveal melanoma of the eye. This session was sponsored in part by Aura Biosciences.They discuss the following:
-RADIATION RETINOPATHY
-Pars plana vitrectomy (PPV) with diode
-ENDORESECTION
-ADVANCES IN TREATMENT OF THE EYE (Aura presentation)Dr. Scott Walter, a practicing ophthalmologist in Hartford, Connecticut and is affiliated with Hartford Hospital.
Dr. David Reichstein, an ocular oncologist, who studied at the renowned Wills Eye Hospital here from Tennessee Retina.
Dr. Peter Hovland, who specializes in vitreoretinal disease & surgery, and ophthalmology, here from Colorado Retina.
At Aura, our mission is to develop a new class of oncology targeted therapies that deliver meaningful therapeutic benefit to a range of cancer indications with high unmet need in which we believe we can establish a new standard of care. We are driven by our passion and commitment to science and the patients battling cancer who are relying on us to pioneer these new therapies.Second half of episode: Understanding Genetics Testing with Castle Biosciences
Join Dr. Reichstein, Dr. Hovland, and Dr. Walter for a discussion on genetics in uveal melanoma.
This session is brought to you by Castle Biosciences.
Castle Biosciences develops and commercializes diagnostic and prognostic tests for dermatologic cancers. These tests provide clinically actionable, tumor-specific genomic information to enable more accurate treatment plan decisions. They believe that the traditional approach to developing a treatment plan for dermatologic cancers using clinical and pathology factors alone is inadequate, and can be improved by incorporating personalized genomic information.
A Cure in Sight is joined by Dr. Marlana Orloff, MD, for a brief but highly informative discussion on liver-directed therapies when navigating metastatic disease. Dr. Marlana Orloff is an associate professor of medicine and medical oncologist at Thomas Jefferson University Hospital – Sidney Kimmel Cancer Center in Philadelphia, PA.In this discussion, Dr. Orloff shares a few slides (you can find those attached at the link below!) talking about the different types of LDT (liver directed therapies) and how they are used, how effective they are proving in certain cases, and also takes about 10 minutes at the end to answer questions! Get ready for a wild ride but it’s so exciting to see there really are SO many options out there for treatment of this disease.
All we want for Christmas is a cure omies–let’s be sure to share and ask our communities for donations to ACIS to help create that reality for as many patients as possible!ANNOUNCEMENTS:Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Alec Mackenzie, a patient diagnosed 3 years ago with ocular melanoma. Alec recently participated in the #lookinforacure walk for OM in Santa Monica and was the top fundraiser of the event! We're so excited to have him on live to share his journey and why he started "The One-Eyed Cooking Show."
Alec’s story:“I had absolutely no warning in terms of diagnosis. I’m not one of those people who had any symptoms. Things were fine, we went away for a long weekend, and on that Sunday morning I woke up half blind in one eye. It just happened overnight with no warning. I thought it was pink eye, but the next day I went to the doctor who instantly referred me to an ocular oncologist once he saw what was going on. I was officially diagnosed the next day with a very large OM tumor. It turns out it had grown so large that it had detached my retina partially, and that’s why I could only see through half of my eye. I had the eye enucleated about three weeks later. That was just over three years ago.
These days I am trying to lead as normal a life as possible with my monocular vision. I am a full-time eighth grade English teacher, and I have two kids who are 16 and 10. I have a very supportive husband who is there through the emotional ups and downs, scan days, doctors appointments, etc.
A few months after my diagnosis, I realized how poorly I had been treating my body. I don’t think that’s what caused the cancer, but it certainly didn’t help. I was eating too much junk food, not taking care of my sleep habits, not dealing with my own mental health, and not getting any exercise. I made the decision to overhaul my lifestyle, get back into running little by little, and try out eating 100% vegan.
After a few months of eating vegan, I realized that just buying vegan foods from the frozen section was just as unhealthy as eating the regular animal-based products, so I started finding recipes online that were only made from fresh, healthy, vegan ingredients. I started posting silly stuff on Facebook about me spilling things or cutting in crooked lines while I cooked those recipes, but people seemed very focused on the actual recipes themselves. That started me posting what I was cooking on Facebook and linking the recipe I had found online.
That turned into my friends and family telling me that I should make some cooking videos and other content around what it’s like to have OM, what OM is, etc. I started the One-Eyed Cooking Guy to show people how easy it is to cook healthy, delicious vegan meals…even if it’s only once or twice a week! Mixed into the recipe videos I also add in content about OM so people can be aware, and I also throw in some silly, stupid short things because I want people to know I have a sense of humor about it all as well.”
Tune in and don’t forget to subscribe, share, and donate below if you can to keep our podcast going!
ANNOUNCEMENTS:Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!***
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
In this session, fellow ocular melanoma patient Dr. Terry Watson teaches how to use the telling of your story to aid in the healing journey after a traumatic diagnosis.
Dr. Terry Watson is a graduate of the University of Louisville School of Dentistry and the owner of Midtown Smiles here in Nashville, Tennessee. He received specialized training in cosmetic dentistry, dental implants, orthodontics, and facial pain therapy. He serves on the faculty for the Tennessee College of Applied Technology’s Dental Assisting Program and has regularly received the Best Dentist Award. Dr. Watson has a passion for improving his patients lives through cosmetic dentistry and enjoys building real relationships with his patients. Diagnosed with choroidal melanoma in his right eye in 2017, Dr. Watson found himself on the other side of the doctor-patient encounter. Upon beginning his treatment, Dr. Watson found help in journaling his journey. He finds purpose in giving back to the community and is an active member of Kiwanis International and a 26-year member of the AWANA Clubs of America. He cherishes time with his wife and two daughters and in his free time is likely to be found outdoors hunting or fishing. Dr. Watson is driven to not let his diagnosis slow him down and hopes that sharing his story will help current and future patients with ocular melanoma.
Join fellow omie, Anne Osborn, as she helps patients navigate "What we can expect of our friends after an OM diagnosis."
Welcome our friend Anne Osborn helping us to understand What we can expect of our friends after an OM diagnosis.
Anne Osborn, Author, as a teen grew up in the shadows of OM when her mother died of OM. Forty years later, she was diagnosed with OM, Class 2.
Anne spent her career in human services, trained as a psychotherapist. Her specialties include initially being a children’s therapist specializing in needs impacting the ability to learn in education. Simultaneously she began leading an emergency team for law enforcement and fire personnel over nearly three decades, ‘when bad things happen to them, we go in’.
Managing her stress was with long distance, both in running and bicycling. Though now, as a Master Gardener time is spent in Nature. Her passion outside of family and friends includes travel, writing and being of service.
Her book,Coping with Ocular Melanoma: A Toolboxis published with proceeds going to ACIS.
Welcome to your Track 2 session for 9am! In this session you will hear from Dr. John Pino in a talk about low vision.
Dr. John Pino has been providing primary eye care for 36 years. As clinical director of one of the largest Optometric practices in Tennessee, Dr. Pino focuses on providing the latest technology to his patients. He is a member of both the American Optometric Association and the Tennessee Optometric Association. Dr. Pino is also a fellow of the International Academy of Low Vision Specialists, an elite group of only 39 professionals worldwide. He is passionate about helping people regain their ability to perform certain visual tasks like driving, reading, or watching television.
Dr. Pino also holds a Ph.D. in the field of nutrition. He places great emphasis on the importance of nutrition with his patients. As a cancer survivor, he is passionate about empowering people to live healthier and happier lives. He is also a Professional Health Coach, and he enjoys lecturing and doing research in the field of nutrition.
Dr. Pino and his wife, Ree, and his dog, Happy, reside in Lebanon,Tennessee, where he practices.
In this session from our second track, Joanna from Triage Cancer discusses navigating insurance. Thank you Triage Cancer for your invaluable information.Joanna is a cancer rights attorney, speaker, and author, dedicated to improving access to and availability of quality information on cancer survivorship issues. Monica is the co-founder and Chief Executive Officer for Triage Cancer, a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Throughout her career, Monica has provided hundreds of educational seminars, written articles, blogs, and co-authored a book published by the American Bar Association called Cancer Rights Law: An Interdisciplinary Approach.For further resources on navigating insurance, see the following past presentations:
Understanding Health Insurance (October 2022)
Medicare: An In-Depth Look (September 2022) (CC)
Decisions About Work: Accommodations, Leave, Disability, & Retirement (July 2022)
Join 5 patients as they discuss their ocular melanoma diagnosis, and some of the struggles, and the strange but welcome gifts that have come despite their diagnosis.Patients participating:
Mike Stansbury - diagnosed Dec 2018, metastatic June 2021
Julie Le Blanc - Diagnosed Sept 2018, metastatic in March 2022
Laura Cunningham - Diagnosed June 2013, metastatic in Dec 2013
Steve Durrant - Diagnosed Spring 2017, NED
Danet Peterson (your host) July 2020, metastatic in Nov 2022
Tune in for an amazing insightful interview.
Join Dr. David Reichstein of Tennessee Retina to discuss what to expect in your eye after treatment.Dr. Reichstein is a graduate of the world's premier Ocular Oncology Fellowship at Wills Eye Hospital, under the direction of Drs. Jerry and Carol Shields. Dr. Reichstein's interests include the diagnosis and management of patients with all types of ophthalmic tumors, including uveal melanoma or nevus, retinoblastoma, vitreoretinal and choroidal lymphoma, vascular tumors of the posterior segment, and choroidal metastases. He also has expertise in the management of anterior segment tumors including conjunctival melanoma, conjunctival or corneal intraepithelial neoplasia, and squamous cell carcinomas of the anterior segment. Dr. Reichstein's therapeutic expertise includes the use of topical and systemic chemotherapy, surgical management of ophthalmic tumors, and radiation using brachytherapy or external beam radiation.
In this session, Dr. Reichstein, Dr. Schefler, Dr. Hovland, and Dr. Walter will be discussing "Standards of Care for Uveal Melanoma, are there any?"Topics addressed include:- NCCN/TNM Staging & guidelines
-Types of Plaque/Proton Beam Treatment
-Transpupillary Thermotherapy (TTT) alone (and why we shouldn't do it)
Dr. David Reichstein, an ocular oncologist, who studied at the renowned Wills Eye Hospital here from Tennessee Retina.
Dr. Amy Schefler, ocular oncologist and renowned eye cancer researcher from Houston Retina, joining us virtually.
Dr. Peter Hovland, who specializes in vitreoretinal disease & surgery, and ophthalmology, here from Colorado Retina.
Dr. Scott Walter, a practicing ophthalmologist in Hartford, Connecticut and is affiliated with Hartford Hospital.
Join Dr. Justin Moser and Dr. Meredith McKean to learn more about the approval of KIMMTRAK and what this means for you as a patient, whether you are HLA-0201 positive and qualify for this treatment drug, or if you do not and wonder what is out there treatment wise for you.
Dr. Moser is a Medical Oncologist who specializes in phase 1 clinical trials, drug development, and cutaneous malignancies. He leads the Melanoma program at HonorHealth Research Institute, and runs one of the only programs dedicated to uveal melanoma in Arizona.
Dr. Meredith McKean received her bachelor's degree from Iowa State University, where the promising athlete ran cross-country and track. McKean completed her fellowship in Hematology-Oncology at the University of Texas MD Anderson Cancer Center. She now serves as the associate director for the Melanoma and Skin Cancer Research Program at the Sarah Cannon Research Institute of Tennessee Oncology.
Join Dr. Justin Moser and Dr. Meredith McKean, together with Dr. Sanger to discuss navigating an ocular melanoma mets diagnosis.
Dr. Moser is a Medical Oncologist who specializes in phase 1 clinical trials, drug development, and cutaneous malignancies. He leads the Melanoma program at HonorHealth Research Institute, and runs one of the only programs dedicated to uveal melanoma in Arizona.
Dr. Meredith McKean received her bachelor's degree from Iowa State University, where the promising athlete ran cross-country and track. McKean completed her fellowship in Hematology-Oncology at the University of Texas MD Anderson Cancer Center. She now serves as the associate director for the Melanoma and Skin Cancer Research Program at the Sarah Cannon Research Institute of Tennessee Oncology.
Maureen Sanger, PhD is a psychologist with Tennessee Oncology providing counseling to cancer patients and survivors. She received her doctorate in clinical psychology from Vanderbilt University and trained at MD Anderson Cancer Center. Prior to joining Tennessee Oncology she was an Assistant Professor of Pediatrics at Vanderbilt University Medical Center where she worked with the cancer and sickle cell disease programs.
A Cure in Sight is joined by Dr. Sapna Patel, MD, of MD Anderson in Texas. She joins in for a discussion on how she guides patients through the decision making process, as well as some of the key things to be aware of as a patient as you are making decisions about navigating your diagnosis.
ANNOUNCEMENTS:
Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!
Newsletter link:
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
In this session, learn what a registry is and what it can tell us with Dr. Armin Afshar from UCSF ocular oncology and one of the investigators of the Insight Registry.
Join the Insight registry below, and be sure to keep updating your surveys.
www.insight.iamrare.org
Dr. Armin Afshar, MD is an ophthalmologist who specializes in treating eye tumors and disorders of the retina and vitreous (the gel-like substance at the back of the eye). He has special expertise in managing ocular surface tumors of the conjunctiva and cornea, as well as intraocular tumors involving the iris, ciliary body, choroid, retina, vitreous or optic nerve.
A Cure in Sight is joined by Dr. Richard Carvajal for a medical webinar-style discussion on:
-
how to understand the data behind a clinical trial?
-
What the decision making process can look like for managing surveillance, ahead of metastatic discovery, or after and what components go into that process?
-
Recommended scan protocol from uveal melanoma oncology teams and how they differ and why
Come prepared with questions and an enlightening and empowering discussion.
A little about Dr. Carvajal:
"Richard D. Carvajal, MD is an Associate Professor of Medicine at Columbia University Irving Medical Center where he serves as both Director of Experimental Therapeutics and Director of the Melanoma Service within the Division of Hematology/Oncology. He serves as Co-Leader of the Precision Oncology and Systems Biology Program within the Herbert Irving Comprehensive Cancer Center. Dr. Carvajal’s research is focused on the development of novel therapies for patients with melanoma [including uveal melanoma] and other cancers, with the overall objective of controlling and curing these diseases."
ANNOUNCEMENTS:
EYE GIVE for Giving Tuesday is open for registration! FB fundraising is currently down for all non-profits--help us out by joining the "Eye Give" movement through this link!
Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
In this session, participate in a live group music therapy session and learn about the benefits of music in healing and stress management with Carrie Friddell.
Carrie Friddell, MT-BC, NMT, is a Nationally Board Certified Music Therapist and Neurologic Music Therapist. She earned her Music Therapy Board Certification in 2005 and has served both children and adult populations. Additionally, she is a licensed Music Together center director. The end of the session uses a host of songs to encourage meditation.
Dr. Stone presents on childhood development, and what are developmentally appropriate responses to navigating ocular melanoma as a family. A patient panel also is consulted to discuss various approaches to talking to kids about cancer, from young children to adults.
Dr. Caitlin Stone received her bachelor’s degree in psychology and child development from Tufts University. She earned her PhD in clinical psychology from the University of North Carolina at Greensboro. Dr. Stone currently serves as a child psychologist for the children's hospital at Vanderbilt.
In this session, Anne helps patients and caregivers work through the process of being “in the waiting room." An OM diagnosis is chalk full of uncertainty. Anne walks patients and caregivers alike through the processing and caring of ourselves in this state of limbo.
Anne Osborn, author, grew up in the shadows of OM when her mother died of OM. Forty years later, she, was diagnosed with OM, Class 2. She spent her career in human services and trained as a psychotherapist. Her specialties include initially being a children’s therapist specializing in needs impacting the ability to learn in education and she is currently a retired marriage and family therapist. Simultaneously she began leading an emergency team for law enforcement and fire personnel over nearly three decades, ‘when bad things happen to them, we go in’. She manages her stress with long distances, both in running and bicycling, though now, as a Master Gardener, much time is spent in Nature. Her passions outside of family and friends include travel, writing, and being of service. Her book, Coping with Ocular Melanoma: A Toolbox is published and available for purchase at the store. All proceeds from her book go directly to patient care.
A Cure in Sight is joined by Dr. Kristin Markell, M.D., an integrative women’s health provider, to discuss the importance of self-compassion in times of high stress.
Dr. Kristin Markell is a double board-certified Integrative Gynecologist practicing in Fayetteville, Arkansas. As a practicing OB/GYN for over a decade, she began experiencing burnout symptoms. While researching and exploring ways to support her health, she found integrative and functional medicine and the personalized options available to diagnose and treat the root cause of her symptoms. After noticing amazing changes taking place in her own health- mind, body and spirit, she knew she had to learn more for herself, her family and her patients. Now, after completing an Integrative Medicine Fellowship at the University of Arizona, she uses the tools of integrative, conventional, and functional medicine to guide women to rediscover their whole self, with a focus on enjoying the special, simple, sacred moments with their loved ones, prioritizing ease and deep contentment, finding their inner power, delighting in life, and healing themselves from burnout, stress, and dis-ease. To learn more about her programs and how to work with her, check out www.kristinmarkellmd.com.
You can find her and follow her content on Instagram here.
ANNOUNCEMENTS:
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Allie, diagnosed June 1, 2022 at the age of 26 with a small choroidal melanoma. Tune in to hear her story and some of her coping skills she has leaned into as a psychologist by profession.
I don’t really know how to say this, but I was diagnosed with an incredibly rare eye cancer, choroidal melanoma, last week. Thankfully, we caught it early. There’s a lot of uncertainty and of course shock, grief, sadness, etc. Just last month, I graduated and made a post where I said, “For me, radically accepting pain is what allows me to enjoy my life in spite of the challenging experiences I’ve had and will continue to have.” Little did I know that just three weeks later, I would receive a devastating, confusing, and surreal diagnosis. As per usual, I am leaning into my dialectics (my favorite) and am finding pockets of joy and appreciating the little and big things in my life. I’m letting the tears flow and using all the dark humor and sarcasm to get me through this nightmare. I’m still trying to process it all and make sense of something that truly can never make sense. Thank you to everyone in my life who has been so incredibly supportive this last week. I feel so grateful for all of the love.
Headed into surgery for plaque radiation to hopefully start radiating and killing this stupid tumor! I feel so lucky that I had eye pain, which isn’t typically a symptom of this cancer and may have been due to my dry eye, which brought me to the doctor in the first place. From my doctor, I was referred to a retina specialist whose colleague was convinced I didn’t have cancer but rather had a different diagnosis. I remember the colleague putting his hand on my shoulder and saying, “The good news is it’s not cancer.” Again, feeling so lucky that at the end of the day, the retina specialist decided not to listen to his colleague but rather referred me to a top ocular oncologist “just to be safe and rule out cancer.” Didn’t think I would be diagnosed with cancer but alas, I was. And lastly, feeling grateful that I was able to get the surgery scheduled so quickly, just four weeks after my initial diagnosis.
Happiness Trap (comic or book form)
Connect with Allie here on social media:
Facebook URL: https://www.facebook.com/allison1215123
Instagram handle: allie_dashow37
ANNOUNCEMENTS:
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Katariina McCrea from Cookeville, TN to discuss being newly diagnosed with mets (cancer spread) 15 months after her initial eye diagnosis and treatment.
Due to the nature of her diagnosis, and a few nuances that are unique to her story, this was both a shock, and not a shock–but Kat shares how she has been coping, some of the thought process her medical team has approached treatment with, and how she copes on the day to day.
A few highlights from her journey so far:
-
initially diagnosed with a retina detachment later found to be a massive choroidal/ciliary body tumor
-
successful brachytherapy, tempered by the news of a difficult biopsy result: class 2, prame positive, with many genetic mutation markers
-
starting an adjuvant clinical trial with the hope of reducing the chance of future spread, and helping further research for someone else
-
receiving the news this month that 2 spots, long seen as stable, had grown and there were many micro-metastases throughout the liver
-
what treatment options were given and why?
-
how do you keep going forward despite all odds?
Living with mets is something most of us dread as omies, but it is a reality for far too many. If you’re also willing to share your journey of living with metastatic uveal melanoma, please email danet@acureinsight.org to be featured on the podcast or social media platforms.
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Presley Jackson and his mom, Stephanie to discuss coming of age with a rare cancer diagnosis.
This month is #childhoodcancerawarenessmonth and there are few more brave than kids tackling a cancer diagnosis.
Please consider sharing this episode and or starting a fundraiser for ACIS on your page to help us ensure patients have the resources they need, as well as funds for future research for #ocularmelanoma
All #pediatriccancer is rare. In the #ocularmelanoma world, it’s even more rare to be born with OM or to experience a diagnosis in childhood.
Presley Jackson was diagnosed at 13 years old.
We wanted to share what he wrote in honor of #nationalbraveday and #childhoodcancerawareness
"If I had to recount a time I faced a challenge or setback I would think back to November of 2018 when I started the battle with the biggest challenge I have and probably will ever face.
This challenge would be my battle with the super rare cancer called ocular melanoma. The cancer and the treatment I received to fight this cancer would ultimately destroy the vision in my right eye rendering me practically blind. This would be my first major setback, because it impacted the biggest part of my life, baseball. I have played baseball since I was 5 years old. It is my pride and joy, and really my life. I love baseball. So when I returned to baseball in the spring of 2019 it was not the same as before.
The cancer had ruined both my depth perception and my reaction time. This made playing baseball exceptionally hard and practically banned me from pitching. Slowly but surely, with hours of practice and work I would make my way back to the mound and back to the standard of playing I was at before my diagnosis. I continue to raise my standards still to this day and continue to push my limits and defy the odds. I may not be the best pitcher, but I give it everything I have got.
Other setbacks would come in my everyday life. I have now become very light sensitive and fragile in a way. I get severe ocular migraines that affect the vision in my good eye as well. My cancer and subsequent radiation treatment took everything my body had, so normal illnesses like Covid, the flu and even the common cold are much worse on me. I also have to deal with hundreds of doctors appointments, scans and travel for treatment. This causes me to miss a lot of school and a lot of normal kid life.
Through everything this challenge has thrown at me, I continue to live my life to the fullest and have even learned some very valuable lessons from it. I learned that no one is promised tomorrow, so you have to make every single moment count. I started a project called the Polaroid Project to help me capture these memories. The second lesson I learned is that family is everything. Having the full support of my family has enabled me to fully believe that anything is possible. Which brings me to my final and most important lesson, nothing is truly impossible."
Presley Jackson Ponce September 21st, 2022
Thank you Presley for your bravery and honesty in sharing your story.
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Anna Malloch and her mom, Wendy, to discuss being a freshman in college at the time of diagnosis.
Due to the nature of her diagnosis and other complications, she noted they experienced 39 appointments in a single year!
Anna shares her story below–tune in to hear more!
“My name is Anna Malloch, I am an OM survivor. I was diagnosed in April of 2020 right when covid lockdown hit. I was 19 years old in my freshman year at Auburn University. About a month into lockdown and the transition to online classes I noticed that my vision was starting to fade in my left eye and noticing flashers. I was able to get an appointment with my primary eye doctor the next Monday. From there I was sent to a retina specialist in Montgomery that afternoon. Who then referred me to a doctor in Atlanta and I was there within two days. This is where we were able to find that the mass was completely solid and was then told I had ocular melanoma. Luckily, we caught it early enough to be able to have the option of a radiation plaque which I did the next week. And from what we can see I have made a full recovery and the tumor and reduced to over half of its size.
Favorite Song: Maverick City Music “Fear is Not My Future” https://www.youtube.com/watch?v=ulFGXnASE4Q
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Cynthia Hayes, author of the book, 𝙏𝙝𝙚 𝘽𝙞𝙜 𝙊𝙧𝙙𝙚𝙖𝙡: 𝙐𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙𝙞𝙣𝙜 𝙖𝙣𝙙 𝙈𝙖𝙣𝙖𝙜𝙞𝙣𝙜 𝙩𝙝𝙚 𝙋𝙨𝙮𝙘𝙝𝙤𝙡𝙤𝙜𝙞𝙘𝙖𝙡 𝙏𝙪𝙧𝙢𝙤𝙞𝙡 𝙤𝙛 𝘾𝙖𝙣𝙘𝙚𝙧. Cynthia is a new connection from the #ASCO22 conference attendance this summer.
A former journalist, Harvard-trained management consultant, and hospital executive, Cynthia is the author of 𝙏𝙝𝙚 𝘽𝙞𝙜 𝙊𝙧𝙙𝙚𝙖𝙡: 𝙐𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙𝙞𝙣𝙜 𝙖𝙣𝙙 𝙈𝙖𝙣𝙖𝙜𝙞𝙣𝙜 𝙩𝙝𝙚 𝙋𝙨𝙮𝙘𝙝𝙤𝙡𝙤𝙜𝙞𝙘𝙖𝙡 𝙏𝙪𝙧𝙢𝙤𝙞𝙡 𝙤𝙛 𝘾𝙖𝙣𝙘𝙚𝙧.
Since recovering from her own ordeal, she has helped raise awareness of the shared emotional experience of cancer, the physical drivers of that experience, and how to cope with it all.
When not speaking or writing about cancer emotions, she volunteers as a peer mentor to newly diagnosed patients, is an avid tennis player and adventure traveler, and lives in New York City with her adoring husband and shih tzu puppy.
Come ready to dive into and understand The Emotional Turmoil of Cancer. We'll be learning about the typical emotional experience that can help you appreciate that you are not alone and help you better anticipate— and manage—the days ahead. Most importantly, hear what experts have to say and how others who have been through it have coped with the emotional fallout of the disease.
The graphic of the rollercoaster is linked here: https://thebigordeal.com/chart/
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Lindsay (Lind-SAY) Brown here on the Eye Believe Podcast to discuss what it’s like to be on the Receiving End of Safe Surgery.
Here's a glimpse into her journey so far:
"The day after I returned from a family vacation in San Diego, CA back to Minnesota I went to the eye doctor. I thought I had been experiencing optical migraine symptoms-- blurry double vision, aura, shadow. At my appointment, he was surprised at how much my prescription had changed and I mentioned to him the slow-motion shooting star that I had been seeing for nearly a year and his expression changed at that moment. This was the day I found out my life was about to change in big ways.
Reality with OM is sometimes hard to grasp. What I do know is that it's unfair to have to try and process this type of diagnosis while preparing for the life-changing treatments that are available for it in such a short amount of time. There was a period of two weeks between diagnosis of OM and my enucleation surgery. What I also know is that I am also grateful for the skilled surgeons and the attention to detail of the Sterile Processing staff in hospital and ambulatory surgery settings. I put my life in their hands when I underwent enucleation surgery and I want more people to understand the behind-the-scenes heroes in safe surgery."
Tune in for a unique story!
Her favorite book she shared is “Think Again” by Adam Grant, and the band she tunes into for happy music is Seryn.
You can connect with Linds here on Instagram or Facebook.
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by fellow OM patient, Lori Jones, who was diagnosed with a choroidal ocular melanoma in June of 2016. She developed metastatic spread in August of 2019. Tune in to hear more about her journey with an integrative metabolic approach to manage her metastatic spread.
“In June of 2016 I was diagnosed with uveal melanoma. There was a large 10 mm tumor in the Choroid of my eye. Within 3 weeks I had radiation plaque therapy. The treatment was successful and the tumor was dead. Through genetic testing of the tumor, I learned that I had a moderate chance of metastasis.
It took me about 2.5 years to be ready to prepare my body for that metastasis. My sister was urging me to talk with a friend who helped her husband use an integrative approach while fighting brain cancer.
I did, and this led me to reading The Metabolic Approach to Cancer by Nasha Winters and Jess Higgins and Radical Remission: Surviving Cancer Against All Odds by Kelly Turner. I started making adjustments immediately.
Six months later, in August of 2019, I was told I metastasized.
What I appreciate most about this approach is that the focus is on LIVING. It is about being healthy and happy. Ironically, I am healthier than I have been in over 20 years. It is about enjoying life and treating your body right. It is about enjoying the earth and feeling the connection to our universe. It is about resolving and letting go of old pain, anger, resentment and moving forward emotionally. I often think, “What if I get away with treating my cancer this way?”
It feels like I am cheating. As far as I know, I am the only person in the US fighting Uveal Melanoma metastasis this way. That’s a little scary and sometimes exhilarating. It makes me want to scream it from the mountain tops and inform people that there IS another way.”
Things to keep in mind from this episode:
-
Consider reading the books referenced above as a preface to learn more.
-
If you do embark upon this journey, seek out help from trained physicians who can link up with your oncology team and create the best unique care plan for your body and your genetic make up.
Head to https://mtih.org/ to connect directly with Dr. Nasha Winters, author of The Metabolic Approach to Cancer, and with members of her practitioner team across the country.
You can connect directly with Lori Jones on Facebook here.
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Dr. Tim Murray, an ocular oncologist with over 30 years in the field of treating primary tumors (eye tumors) of ocular melanoma to discuss:
Small Choroidal Melanoma: Advances in Treatment with Laser.
Timothy G. Murray, MD, MBA is currently the Founding Director/CEO of Ocular Oncology and Retina of Miami Florida. Dr. Murray’s early academic career was focused on the development of an integrated Ocular Oncology service beginning at the Bascom Palmer Eye Institute, Sylvester Comprehensive Cancer Center. In 2012, Dr. Murray founded the Ocular Oncology and Retina Center in Miami, Florida, and has had 10 years in private practice.
Dr. Murray continues as Tenured Professor Emeritus in Ophthalmology and Radiation Oncology with the Bascom Palmer Eye Institute/Sylvester Comprehensive Cancer Center.
Dr. Murray’s focus on founding the private Ocular Oncology and Retina Center was related to his
ongoing pursuit of excellence in clinical care particularly targeted on advanced imaging and treatment technologies. Dr. Murray’s Ocular Oncology and Retina Center continues to provide International, National and Regional care for patients with life- and sight-threatening complex eye disease.
His interview is chalk full of insights and updates in research in the field; referencing a few key studies presented at the 2022 ISOO conference this summer about the importance of early detection of eye melanomas, early and effective treatment of those melanomas, yielding better prognosis for patients, regardless of their genetic expression.
He shares insights for what type of comprehensive eye exams are most important for detection, and concludes the conversation by breaking down the laser treatment therapy option for small melanomas. The pros and cons are explored, as well as the types of tumors best suited for this emerging eye treatment.
LIST OF OCULAR ONCOLOGISTS DR. MURRAY WOULD REFER TO ASIDE FROM HIMSELF
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022; Registration details coming soon!
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by Dr. Aparna Rama from Phoenix Children’s Hospital. In connection with Children's Eye Health Month and National Eye Exam month, we are discussing children's eye health and eye exams on this special episode.
Points of discussion in this episode include:
-
Importance of children’s eye examination – need for timely examination and management
-
Myopia and refractive error – increasing incidence
-
Strabismus (eye misalignment)
-
Eye safety
-
Electronic use and kids eye health
-
White eye reflex – retinoblastoma. Importance of early detection
-
How are pediatric eye examination conducted
Dr. Aparna Ramasubramanian is the medical director of the Phoenix Children's retinoblastoma program. An expert in the field of ocular oncology in the United States, Dr. Ramasubramanian has very unique training as a dual fellowship-trained physician in both pediatric ophthalmology and ocular oncology. Since coming to Phoenix Children's, Dr. Ramasubramanian has significantly grown the multidisciplinary program. She treats patients from not only from Arizona and the Southwest, but also children and families from across the country who travel to Phoenix Children's for their ongoing specialty care.
Dr. Ramasubramanian is the author of the leading textbook on retinoblastoma and the program developer for the `Cure Retinoblastoma' campaign run by the Children's Eye Foundation. She received the American Academy of Ophthalmology Achievement Award in 2018 and the Knights Templar Research Award for her research in retinoblastoma.
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022; Registration details coming soon!
Email contact@acureinsight.org for questions regarding any upcoming events!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
A Cure in Sight is joined by fellow OM patient, Jackie Stiles, WNBA basketball player who was diagnosed in December 2017 with ocular melanoma.
Jackie Stiles is one of the most renowned basketball players in the history of the women's game. From her roots in Claflin, Kansas, she led the country in scoring. Then to Southwest Missouri State University, she rewrote the NCAA women's basketball record books en route to leading the Lady Bears to the 2001 Final Four. Finally to a professional career in the WNBA, Jackie has inspired and impacted millions.
Here’s a sneak peek into her story:
“I noticed sometime in October that I was not seeing very well, especially at night. I had Lasik eye surgery done in 2003. I had always heard that after 10 years you sometimes need a touch up. While I was home for Thanksgiving, I asked my mom, who is a school nurse, to check my vision. My left eye was 20/40 and my right eye was 20/30. She told me I should probably go to the eye doctor. Then I noticed in practices that I had to really focus in order to catch a ball coming from across the court. My depth perception seemed off. This started to bother me.
I had not signed up for vision coverage on my insurance this year, so I thought maybe I would wait until the following year to go see the doctor.
I decided to flip a coin.
I know this sounds crazy but I have a system of flipping best two out of three when I cannot decide on something. It told me to go to the eye doctor.”
Tune in for the rest!
Head to www.jackiestiles.com to connect with Jackie directly. Stay tuned for her life documentary to release, August 30 on Amazon Prime; The Jackie Stiles Story.
A few highlights from Jackie’s interview:
3 things you can focus on as a new patient in this diagnosis: 1. Focus on what you can control amid all the uncertainty
- Focus on loving others, and accepting love from others; and when possible, try to do something for someone else–the act of showing up with purpose to this diagnosis makes all the difference in how it feels to be on this journey.
- Get back to your everyday life the best you can, despite the changes–don’t let this diagnosis take up more space than it deserves!
Jackie’s daily questions to herself are “did I live? Did I love? Did I make a difference?
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Email contact@acureinsight.org for questions regarding the event!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by rare, iris melanoma survivor, Ron Cribb.
Ron is from Auckland, New Zealand, and was diagnosed at age 48 with an iris melanoma in September of 2021. He had a very unique procedure done where a portion of the iris (the colored section) of his eye was surgically removed, and he has now spent 9 months adjusting to different vision, as well as a prosthetic iris to cover what is literally a hole in his eye. He hopes by sharing his journey to connect with even just one other patient who has experienced both iris melanoma, and this unique procedure for removal of the tumor.
Rob continues living fully with his family, refusing to sweat the small stuff along the way.
You can find him on Facebook: https://www.facebook.com/ron.cribb
Or in the Man-Cave Facebook Group for ocular melanoma patients: https://www.facebook.com/groups/474291186483865/?ref=share
ANNOUNCEMENTS:
Save the date for our Eye Believe Survivorship Seminar in Nashville!!
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) We hope to see you there!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
Join A Cure in Sight on The Eye Believe Podcast and various research experts and clinicians who attended American Society of Clinical Oncology (ASCO) Conference early June 4-6, 2022, as well as the 20th Congress of the International Society of Ocular Oncology (ISOO), June 17-21, 2022. A Cure in Sight attended both to gather updates in research and present a united, collaborative front for the sake of patient advocacy in the field of ocular melanoma.
In this episode, you’ll hear from the experts about what’s new in ocular melanoma and uveal melanoma. You’ll also hear news of new clinical trials, and upcoming expanded access programs for treatments for metastatic uveal melanoma.
Tune in for updates from:
Jerry Wu with Ascentage Pharma, focused on an abstract from Dr. Meredith McKean of the Sarah Cannon Cancer Center in Nashville discussing a novel cancer treatment for uveal melanoma called APG-115. Search “APG-115 melanoma” on ascentage.com, or listed on clinicaltrials.gov.
Dr. Johnny John from Delcath discusses the presentation of data from the FOCUS Trial at ASCO and the opening of Delcath’s Expanded Access Program for patients with Metastatic Ocular Melanoma. Information on EAP sites may be found on https://delcath.com/clinical-trials/expanded-access-program/
Karin Hellsvik with Foghorn Therapeutics, discussing uveal melanoma patient advocacy, as well as the existing study for uveal melanoma patients, found by searching FHD-286 on clinicaltrials.gov.
Dr. Justin Moser with HonorHealth Research and Innovation Institute in Scottsdale AZ, discussing a new West Coast clinical trial for metastatic uveal melanoma patients. Info on this trial can be found here:
https://clinicaltrials.gov/ct2/show/NCT05004025
Danet Peterson, sharing about her personal ocular melanoma journey in a brief ASCO interview with i3Health.
Dr. Cadmus Rich with Aura Biosciences discussing the AU-011 (belzupacap serotalocan) program, including an upcoming pivotal study for primary choroidal melanoma treatment. Search AU-011 on clinicaltrials.gov for more info.
Dr. Johnny John from Delcath along with Dr. Ellen Kapiteijn and Dr. Thaïs Tong from the Leiden University Medical Center discusses the presentation of data from the Chopin Trial in which Delcath’s percutaneous hepatic perfusion treatment is combined with immunotherapy for patients with Metastatic Ocular Melanoma. Preliminary data from the trial was presented at the ASCO conference and was also presented at the ISOO conference.
Steven Katz, Chief Medical Officer at TriSalus Life Sciences discussing early safety data from the PERIO-01 clinical study. See www.periotrial.com for more info.
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Email contact@acureinsight.org for questions regarding the event!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by fellow OM patient, Kenny Rains, from the "OM Mancave" , who was diagnosed with a choroidal ocular melanoma August 31st of 2021.
In this episode, Kenny shares his story, including the discovery and diagnosis of his eye tumor, the treatment options he weighed and why, with a specific emphasis on his mental health journey..
Here’s a preview of his interview:
“It all started when I noticed that my vision was getting blurry in June. I thought that my prescription for my eye was changing so I went to the local optometrist and they changed my prescription. I did this a few times but then I started to notice my vision was distorted. After some urging from friends I went to the local ophthalmologist and that’s when I saw the grid and noticed just how bad my vision had become. They dilated my eyes and that’s when they got a picture of my tumor located right on the macula and eating it’s way into the fovea. Each day I felt like I was losing more vision until I got the radiation and I went almost completely blind in my right eye. It was an extremely difficult week of treatment but they were able to save my peripheral vision in my right eye.
The human body is incredible and I quickly became left eye dominant and my brain managed to compensate so I still retain almost a full field of view with both eyes open. I can still do virtually everything I did before and try to make the most of every day. This disease has shown me that each day is a gift and we should treat it as such. Cancer has been brutal but it has also been a gift. As I have gone blind my eyes have been opened to the reality that tomorrow is not promised and yesterday is gone so today is what we have.”
You can get to know Kenny more by connecting with him on Facebook or Instagram.
Find the Ocular Melanoma Mancave for patients HERE on Facebook.
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM) (Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Email contact@acureinsight.org for questions regarding the event!
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by a fellow cancer survivor, Terri Wingham. Terri is the CEO and Founder of A Fresh Chapter (AFC). She believes that people are not defined by the most difficult parts of their story and she is passionate about helping others redefine and reclaim their lives—whether living with or beyond cancer. Terri is a committed global health advocate who also loves photography, travel, hiking, and any opportunity to create a meaningful connection with others.
Connect with them on Facebook: A Fresh Chapter
Or on instagram: https://www.instagram.com/afreshchapter/
You can register for the upcoming empower workshops at the link below, on a first come first serve basis:
https://afreshchapter.com/empower-registration/
Application for the Ignite Experience closes on June 28th! See the site for details and application process!
https://afreshchapter.com/ignite/
ANNOUNCEMENTS:
Save the date for our Eye Believe Survivorship Seminar in Nashville!!
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by fellow OM patient, Clay Butler, diagnosed with a choroidal ocular melanoma on New Year’s Eve, 2021. He opted for enucleation on 2/22/22.
In this episode, Clay shares his story, including the discovery and diagnosis of his eye tumor, the treatment options he weighed and why, his enucleation journey thus far, and what is his focus presently.
He shares empowering mindsets that help in navigating many phases of this diagnosis; one such thought being the question: What am I missing out on, vs what I can DO about this?
His episode is jam packed with insights and ideas.
You can get to know Clay a little more through some of his work in the links below, and connect with him on Facebook, or Instagram (@twilight.ninja).
ANNOUNCEMENTS:
Save the date for our Eye Believe Survivorship Seminar in Nashville!!
October 13-15! Virtual is only 14-15. REGISTER HERE!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
Episode Title: An Ocular Oncologist’s Perspective with Dr. Amy Schefler
A Cure in Sight is joined on The Eye Believe Podcast by Dr. Amy Schefler to discuss her perspective on what’s new in research as well as an update on genetics in the field of ocular oncology.
Dr. Amy Schefler graduated from Yale University and received her medical degree from Cornell University, followed by an ocular oncology fellowship at Memorial Sloan-Kettering Cancer Center, and residency, chief residency, vitreoretinal surgery training, and ocular oncology fellowship training at Bascom Palmer Eye Institute. After two years on the faculty at Bascom Palmer, she moved to Houston, Texas where she has been for eight years. In Houston, she runs the adult ocular oncology service at Houston Methodist Hospital and the pediatric ocular oncology service at Children’s Memorial Hermann Hospital. These ocular oncology services are among the busiest in the United States, consistently enrolling among the most patients in multiple large multicenter clinical trials.
Dr. Schefler is a renowned researcher in eye cancer, and has published over 80 peer-reviewed publications, 20 book chapters, and given over 90 national and international meeting presentations. In addition, she serves as a reviewer for 20 major ophthalmic journals. She participates in all of the major currently enrolling multicenter clinical trials in eye cancer in the U.S., including Aura, COOG2, trials in radiation retinopathy, and trials in retinoblastoma.
ANNOUNCEMENTS:
Don’t forget to mark your calendars for Nashville’s Eye Believe Seminar! October 14-15 this year!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
Getting to know Castle Biosciences with Dr. Kat Alsina
A Cure in Sight is joined on The Eye Believe Podcast by Dr. Katherina Alsina (she goes by Kat), who is Associate Director of the uveal melanoma division at Castle Biosciences. Castle is a commercial stage diagnostics company that is focused on providing physicians and their patients with personalized, clinically actionable information to make more accurate treatment decisions.
In this brief discussion, Kat shares the origin and history of Castle Biosciences, how they got started, and how their DecisionDX UM testing was their first molecular test. All of Castle’s Uveal Melanoma relevant tests are discussed, as well as options the testing affords patients in surveillance care. The research behind the biopsy tests is briefly explained, as well as ways that Castle ensures patients have the financial aid for these tests. International testing is also touched on!
See below the contact information for the financial aid discussed:
Physicians and patients can get more information about insurance coverage, claims processing, and financial assistance by calling 866-788-9007 and selecting option #3.
To access the lists of currently recruiting clinical trials which are compiled by Castle’s UM team and updated quarterly, go to https://myuvealmelanoma.com/ and click on the “Helpful Resources” tab, then click on “Clinical Trials”
To access the lists of currently recruiting clinical trials which are compiled by Castle’s UM team and updated quarterly, go to https://myuvealmelanoma.com/ and click on the “Helpful Resources” tab, then click on “Clinical Trials”
Kat expresses how Castle Biosciences “has a patient oriented approach in everything we do, and that has been especially rewarding” in their work.
Thank you again to Castle Biosciences for their continued work for patients with rare diseases like Ocular Melanoma.
Announcements
May is Melanoma Awareness Month and Healthy Vision month! Any time you share one of our social media posts or podcasts to inform friends and family you are making an impact in sharing and spreading awareness for ocular melanoma with us!
Thank you to all who participated in Eye Patch Days!
As summer begins, ensure you are following safe sun practices for both your eyes, and your skin!
You don’t have fur – so make sure you cover up to keep your skin safe. Take these small steps to sun safety:
sunscreen
sunglasses
shade
protective clothing
Remember! The best sunscreen is the sunscreen you’ll use. Practice sun safe habits and wear sunscreen every day.
Your coolness factor goes up with sunscreen and shade!
**To help reduce rising rates of skin cancer from overexposure to the ultraviolet (UV) rays of the sun, the National Council on Skin Cancer Prevention has designated the Friday before Memorial Day as “Don’t Fry Day” to encourage sun safety awareness and to remind everyone to protect their skin while enjoying the outdoors. (In collaboration with @skincancerprev )"
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. Any donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. Donat on PAYPAL OR VENMO or on our website.
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined on The Eye Believe Podcast by Katie Wilson, M.A, L.C.P.C., discussing insights on, “When Tragedy Becomes the Teacher.” Katie is a fellow Ocular Melanoma survivor as well as a clinical therapist with over 15 years of experience.
Katie believes the greatest outcomes grow from the most challenging circumstances, and that we as adults can transform these challenges into profound learning experiences. Her research focus has been on human flourishing, specifically eudemonia (you de monia), following tragic life experiences.
Katie is also an instructor of psychology at North Idaho College. She resides in Coeur d’ Alene (core dah lane), Idaho with her two children, where she works as a trauma therapist.
As a survivor, she volunteers as an advocate and fundraiser for ocular melanoma patients. Her purpose is to assist her fellow survivors in living their absolute best, most meaningful lives.
The song referenced in this episode is below:
“I believe in the sun
even when it is not shining
And I believe in love,
even when there’s no one there.
And I believe in God,
even when He is silent.” (Unknown, written during WW2, on the wall of a cellar, by a Jew in the Cologne concentration camp)
Recording to a version of this piece turned into music.
A few moments from her episode:
Recall the Disney movie, Inside Out–remember that sadness, grief, suffering–they help us to grow as people to experience joy. If we are constantly chasing happiness, we usually miss the mark. We need BOTH sets of emotion for the full human experience. The “happy” emotions and the “tricky” emotions.
Difficult emotions exist to be felt, but we tend to try to avoid them. Remember, we as human beings are programmed to thrive, despite the obstacles we go through.
ANNOUNCEMENTS
May is Melanoma Awareness Month and Eye Patch Days are on May 20-22!
Help us raise awareness for Ocular Melanoma!
-
Decorate a patch! Encourage family and friends to do the same!
-
On May 20-22, proudly wear your patch any of those days to experience the day in the life of an omie if you’re a caregiver, or wear it around town to spark conversations around OM.
-
Post any photos to enter the contest for best decorated patch on social media (make sure we can see it @acureinsight and #eyepatchday) OR email a submission to contact@acureinsight.org
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight, in collaboration with the Ocular Melanoma Foundation, is joined by TriSalus Life Sciences to bring you a presentation on Barriers to Immunotherapy: Success for Uveal Melanoma Liver Metastases.
The slides from this presentation can be found to follow along here on Youtube.
In this presentation, we will be hearing from three of the experts involved in the PERIO-01 Clinical Trial.
The Pressure-Enabled Regional Immuno-Oncology (PERIO-01) clinical trial is studying a new investigational drug, SD-101, delivered intravascularly by the TriNav® Infusion System using the Pressure-Enabled Drug Delivery™ (PEDD™) method of administration. The study is evaluating if this platform approach can improve the performance of systemic checkpoint inhibitors in treating patients with uveal melanoma liver metastases by overcoming two major challenges of treatment: immune response suppression and ineffective drug delivery.
First up, you’ll hear from Dr. Richard D. Carvajal, MD, Associate Professor of Medicine, Director, Experimental Therapeutics, Director, Melanoma Service, Columbia University Irving Medical Center; Investigator, PERIO-01 Clinical Trial. Dr. Carvajal will discuss Successes, Challenges and Emerging Strategies in the Treatment of Metastatic Uveal Melanoma.
Following his presentation, Dr. Steven C. Katz, MD, FACS, Chief Medical Officer, TriSalus Life Sciences will discuss Barriers to Immunotherapy Success in Uveal Melanoma Liver Metastases.
To conclude you’ll hear from Dr. Joshua L. Weintraub, MD, Executive Vice Chairman, Department of Radiology, Chief, Division of Vascular and Interventional Radiology, Columbia University Irving Medical Center about the Pressure-Enabled Regional Immuno-Oncology (or PERIO-01) Clinical Trial for adults with uveal melanoma liver metastases.
After their presentation, Ashley Moody from TriSalus Life Sciences joins in to aid in the Q and A. Ashley is a Nurse and a Clinical Research and Immunotherapy Project Manager. She will answer logistical questions surrounding trial involvement (eligibility, trial flow, treatment logistics, travel reimbursement, if applicable, etc.) following the presentation.
Information on the PERIO-O1 Clinical Trial can be found at www.PERIOtrial.com
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
The host of The Eye Believe Podcast, Danet Peterson, shares some ideas from Cait, @thecancercouncelor on Instagram, on setting boundaries when faced with the diagnosis of ocular melanoma, and the accompanying seasons you may encounter.
See Cait’s post re-shared by @acureinsight here for the visual of ideas to save and share.
Setting healthy boundaries for yourself is critical in maintaining your mental health as a patient with a long term diagnosis.
ANNOUNCEMENTS:
SWING FOR SIGHT is coming up later this month!! Join us in Napa! Spots are limited! Register to be part of this social event April 23, 2022; register for your spot here!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINKS TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Agora Media.
The Eye Believe Podcast is joined by Yvonne Kirondomara to share her story thus far with ocular melanoma.
She speaks of her unique Brown-Eyed Story, because as many of us know, this cancer is rare, but it is most common in blue and green eyed patients.
"I was surprised on December 12, 2019 when I was told that I had a rare cancer in my eye called Choroidal Melanoma. What was that called again? I was taking notes as my doctor was telling me my diagnosis. It was completely shocking to hear just a few weeks ago, I was getting my normal eye exam when my eye doctor was like “I see something in your eye so I would like to send you to a retina doctor to double check it ok”. I was like “ok sure, no worries”.
I realize looking back, my journey has just begun and I know that I need to get this information out to those that do not know. As eye cancer is not for only the blue eyed, fair skinned it does show up in Latinas, African Americans and brown eyed people, because it happened to me."
Make sure to tune in to our interview with Yvonne and hear her story firsthand!
Be sure to share and let your omies and friends and family know to tune in live if they can to support her!
ANNOUNCEMENTS:
SWING FOR SIGHT is coming up in April! Join us in Napa! Spots are limited! Register to be part of this social event April 23, 2022; register for your spot here!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10, $15, or $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
The Eye Believe Podcast brought to you by Castle Biosciences. This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined in The Eye Believe Podcast by Arielle Farkash, a patient diagnosed with ocular melanoma in Nov 2018.
Three things she would share with anyone beginning their journey, or in a hard place:
- Focus on what you know–don’t get caught up in the stories of what if.
- Ask ALL the questions–they’re all valid!
- It may be hard now, but it DOES get better with time. All things good and bad DO come to an end eventually; when it’s hard, hang on and when it’s good, lean in and be present.
Arielle recommends a course available to cancer patients to allow you to link up with other patients and develop resiliency skills. You can find more details about A Fresh Chapter at https://afreshchapter.com/ignite/
Her favorite book, Bright Side, by Kim Holden can be found here https://amzn.to/34yRNON
ANNOUNCEMENTS:
SWING FOR SIGHT is coming up in April! Join us in Napa! Spots are limited! Register to be part of this social event April 23, 2022; register for your spot here!
Be sure to follow us on Facebook, Twitter, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10, $15, or $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
The Eye Believe Podcast is brought to you by Castle Biosciences. This podcast was hosted by Danet Peterson and produced by Agora Media.
Topic: Why see a uveal melanoma oncologist and how to talk with your oncologist about clinical trials?
A Cure in Sight is joined by Dr. Justin Moser, a medical oncologist in the Phoenix, Arizona area.
He shares helpful tips to keep in mind when having discussions with a medical oncologist, and why it’s vital for patients to be seen and under the watch and care of a medical oncologist either familiar with uveal melanoma protocols for scans and care, or someone who is willing to learn from another oncologist in the field.
Dr. Moser explains some of the process behind selecting a clinical trial for a patient experiencing metastatic spread, and how you as a patient can ask for less known trials that are not entirely ready for Uveal melanoma yet, but are planned to have a few spots for uveal melanoma spread.
Thank you Dr. Moser for your time and research!
Dr. Justin Moser is a medical oncologist and hematologist and associate clinical investigator at HonorHealth Research Institute, clinical assistant professor at the University of Arizona College of Medicine – Phoenix, and an adjunct faculty member at the Translational Genomics Research Institute (TGen). He is an expert in the treatment of melanoma and other skin cancers and co-leads the Cutaneous Oncology Tumor Site Strategy Group for HonorHealth.
Dr. Moser graduated from the University of Iowa Carver College of Medicine with distinctions in research and teaching. He completed his Internal Medicine Residency at Mayo Clinic in Rochester, Minnesota and his fellowship in Hematology/Oncology at the Huntsman Cancer Institute. He has strong passion for developing new treatments for patients with cancer and was a visiting fellow at the Cancer Therapy Evaluation Program at the National Cancer Institute.
Dr. Moser’s has a special focus on patients with rare skin cancers, such as uveal melanoma, squamous cell carcinoma, Merkle cell carcinoma and basal cell carcinoma, as patients with these cancers often have fewer treatment options available.
For more information on the HonorHealth Research Institute Melanoma and Skin Cancer Clinic or to make an appointment please call our Nurse Navigators at 480-323-1364 or email clinicaltrials@honorhealth.com.
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
In today's episode, Danet talks about the invisible burdens of ocular melanoma. The graphics linked in the social media posts below may be helpful to you to share with others to communicate what you are grappling with on a day to day basis.
You may often feel alone in this diagnosis:
Loved ones and friends want to support you, but you don’t have the words to convey why you need support, or what is challenging.
If all you can do today is acknowledge that you have a lot of emotions, a lot of burdens to carry now; and just ask for validation from others that it’s hard, and allowed to be hard—that’s enough.
Be gentle with yourself. You carry a lot omie.
Please reach out if you feel you need support or a listening ear. Our companionship program can help pair you with another omie as a sounding board. (And social media can help us do that too!)
Instagram post:
https://www.instagram.com/p/CYaIi1zvg4D/?utm_medium=copy_link
Facebook post:
https://www.facebook.com/475694439137179/posts/4916071988432713/?d=n
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
*Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below--or donate to the overall goal:
https://www.charityfootprints.com/sight/eventdetails
A Cure in Sight is joined by Tanya Gibson, sharing her journey since being diagnosed in March 2021 with choroidal melanoma.
She summarizes her story below:
Tanya Gibson
Cancer & Leadership
I remember the moment I knew that I was going to hear “you’ve got cancer”. It was the day after my doctor called me to tell me he was “worried”. Something in me, my inner knowing, took over after that phone call. I had the best sleep. I woke up rested and clear headed. I went to the computer and looked up everything he had told me. And I knew. I thought “Fuck. I’m going to find out I have cancer.” And just like that it was go time. I had just been given the opportunity to put into practice everything I had learned over the past 20 years about mindset, leadership, energy, emotional intelligence, health and healing. I sat down with a piece of paper and wrote “how do I want to experience this journey.”
I needed to be quiet for a while. I kept what I knew to myself, to protect my energy & mindset, until I was strong enough to handle other people’s experiences, fears and projections with cancer. You see, when people love you, their worries and fears can be dominant. I needed to be rock solid to handle that and not absorb it. I had to get my body ready for something it had never done before, go through 2 surgeries in a week. Nourishing it and ensuring it was as strong as possible. I was facing a new challenge. One I needed to lead myself through fully empowered, full of optimism and in full physical strength. I had to be unshakeable in holding MY vision of MY future. I needed to be unstoppable.
It all started in March 2021, at an annual eye exam, my eye doctor found something suspicious. He called me in the evening to say “I’m worried”. After 4 weeks of appointments, specialists, tests & hospitals, I was told the diagnosis, choroidal melanoma. I remember phrases as I was focusing on breathing. How did you end up here? We’ve never gotten one this small. It was caught early. Excellent prognosis. Radiation. Keep your eye. Risks. Ocular muscle. 90%. Sign here. Pre-op testing today. I was in a daze still trying to comprehend all that I was told as I was having x-rays and scans and blood tests to prepare for surgeries in 2 weeks. I left the hospital and walked for an hour processing everything I had been told. The bottom line was this was caught through an annual routine eye exam, before it had progressed to be symptomatic. I decided that I was expected to make a full recovery with this being a minor speed bump in life.
It was overwhelming. It didn’t feel real. It felt scary, AND it was great news. Considering what I had just been told, I was excited because it was the best outcome that was possible. THAT needed to be my focus. At the same time, I was equally exhausted, filled with so many emotions and I needed to cocoon. I wanted processing time. I needed to figure out how I was going to move through this experience.
In April, I had surgery for Brachytherapy, where a radiation plaque was placed on my eye, and another surgery to remove it a week later. My nephew concluded, in his 7-year old innocence, that I would have a bionic eye with special powers. I liked that and that is how I now think of it.
The surgeries went better than expected, leaving all muscles and nerves fully intact. It has been a journey since April, adjusting to life with a “bionic eye”. I have had challenges through recovery. I have spasms in my eye and shots of pain. I struggle with screen time. I was scared to drive and it has taken me quite a while to adjust to nighttime driving. My eye is sensitive to the light. I can wake up with tons of energy and need a nap 2 hours later as I fatigue easily. I am learning to live life differently with these challenges. Many people comment on the visual aspect that they see saying things like “you look so good” or “you can barely tell”, but what no one can see is how cancer changes you on the inside. And that has been the biggest journey of all!
I believe that what we put our attention on grows. While I have side effects, I don’t give them much attention or talk about them much. No one can truly understand what we each go through. But that is the same with everything in life. No two diagnosis are the same, no two divorces are the same, no two parenting experiences are the same. We are unique and therefore our experiences are unique to us. I am learning to live with the ways that I am different and work with that. I acknowledge how I am feeling, I honour the feelings, I give them space and I rest when I need to. But my main focus is on gratitude. I would rather put the attention on all of the things that I feel grateful for. My eyesight is fully intact. I get to see all the beauty that surrounds me. The tumour is controlled. I get to experience more in life as a result. My body has an incredible ability to heal and it is continuing to get stronger every day!
One of my core beliefs in life is that we get to create the life we desire. The things that happen to us in life are neither good or bad, but rather it is how we experience it that we end up defining as good or bad. We choose our response to the circumstances and that informs our experience. I honour the feelings I have, and I choose to move forward with gratitude and optimism.
Just 3 weeks prior to this diagnosis, I had completed a restructuring at work and was in my final months of my corporate job. I was ready to pursue a new career challenge with a focus on leadership. At the same time, the city I lived in, Toronto, Canada, was in a lockdown state due to the pandemic. The circumstances were less than ideal to receive a cancer diagnosis, but they were just circumstances.
It certainly felt like an overwhelming blow. It knocked the wind out of me, there were plenty of tears. But those beliefs I have rang loud and clear. I get to decide how I will experience this. I create the life I desire. It is up to me to choose my response to these circumstances.
During the time between diagnosis and prognosis, I sat and journaled on two main themes. I repeatedly wrote and reflected on one question “What if this were my last summer”. Once I was able to get through all of the tears and scary “what if” scenarios, I realized that no matter what, whether I had one summer left or sixty summers left, I wanted to experience it with fun, laughter and love. I wanted to live a valuable life with meaning and purpose. And that became part of my approach. The other thing I did was I wrote my obituary. I wrote it from the perspective of my 106 year old self, looking back on my life. I concluded that I wanted to be a youthful and energetic old lady at 106, with her beautiful eyes and eyesight intact, filled with love, and a sparkle and twinkle of curiosity and mischief in them. I wanted to be able to look back on this experience and know that I did something great with it.
Our circumstances don’t define us. It’s what we do with the circumstances that is truly defining. I had to look at this situation from the perspective of how I wanted to feel and what I can learn from this.
With these challenges I was facing, came the opportunity to strengthen my resolve and lead myself in new ways, to better prepare me for the future I desired to create and build and to gain clarity on the impact that I wanted to have. Ultimately, that is what leadership is. We are faced with challenges and we step up to figure out how to move through them and sometimes we inspire others along the way. We go first and pave a path for others to follow and have an easier journey. We lead by example to show others if we can do it, so can they. We remain optimistic, believing that no matter what, things will always work out, even during the toughest of times.
While it is important to have a plan in life, it is even more important to realize that things rarely happen how we plan. When we get hung up on what did or didn’t happen, we stay stuck. Our success comes not from the plan, but how we how we adapt, pivot and respond to the curveballs along the way. Our growth comes not from the results, but from taking a step back to reflect on the action we took and finding the lessons along the way. Our progression comes not from what we achieved, but from figuring out how we can raise the standard and do better next time.
I look back on the 2021 that I never imagined, yet feel proud at all I’ve overcome. I am incredibly excited to be stepping into each day, with a whole new perspective, a redefined vision with a bionic eye and even more leadership skills & lessons than before.
I had a 6 in 1 million chance of getting this. I had never heard of this type of cancer. It’s considered rare. My prognosis is incredible, thanks to early detection. I plan to exceed expectations and do it my way. I know this will be a story I will tell in my 100’s, letting everyone know how rare I am as I look at all of the beauty around me feeling so grateful for an incredible life, my gorgeous eyes and eyesight.
Remember, I create the life I desire!
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
*Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below:
https://www.charityfootprints.com/sight/eventdetails
A Cure in Sight is joined by Anne Osborne, an OM patient and also therapist, sharing her journey with Ocular melanoma thus far.
She shares about the journey of being a patient with ocular melanoma, and also a rare daughter of another patient, her mom, who was diagnosed with Ocular Melanoma years before her.
See her book below to read more about her journey and the support resource she created to help other patients, and to work through the worksheets to help you self reflect on how you are navigating your journey.
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
SAVE THE DATE
Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below:
https://www.charityfootprints.com/sight/eventdetails
DEADLINE TO REGISTER YOURSELF/YOUR TEAM is JAN 15! Don't wait! We start tracking our 7K steps a day on Jan 1-31!! Take steps toward a cure with us!
Read or to learn more about our first annual #stepsforsight2022 awareness challenge (and r e g i s t e r!)
Just in time for the new year, those New Years resolutions—we have officially opened registration for our first STEPS FOR SIGHT challenge!
Our goal? $1M IN JANUARY—will you link arms with us to make this impact!?
Here’s the low down:
7000 steps a day for 31 days in January, beginning on New Year’s Day—symbolic of the estimated 7k people per year who are diagnosed with ocular melanoma world wide.
Every step you take will get us closer to funding critical research to find a cure.
Currently there is no cure for ocular melanoma but with your help, we could find one. For every $10,000 raised, we could help 10 patients with their medical bills.For every $20,000 raised, we could re-start a stalled research project.For every $50,000 raised we could start a research project for a cure. If 1,000 people raised $1,000 dollars, we could raise $1,000,000.
With $1,000,000 we could fund 10 new research projects, assist patients struggling with ocular melanoma, and educate the public on the importance of comprehensive eye exams.
Register today so you’re ready to go on JAN 1!
https://tinyurl.com/ACISstepsforsight
Register yourself at the link Create a team + goal, then invite friends + family to join in! Pair your fitness app or device to track steps starting 1/1/22 Share your unique OM story with your team link for social media to join in Track your progress on the "Eye" starting Jan 1 through Jan 31. Track and encourage others to help us reach our steps goal!
Can’t wait to step it out with you this new year!
BE SURE TO LOOK FOR THE CONFIRMATION EMAIL THAT HAS THESE STEPS AND LINKS FOR THE APP, AND YOUR UNIQUE LINK TO SHARE WITH FRIENDS AND FAMILY SO THEY CAN JOIN YOUR TEAM! (It can sometimes go to spam so check there!)
Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below:
https://www.charityfootprints.com/sight/eventdetails
DEADLINE TO REGISTER YOURSELF/YOUR TEAM is JAN 15! Don't wait! We start tracking our 7K steps a day on Jan 1-31!! Take steps toward a cure with us!
*Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below:
https://www.charityfootprints.com/sight/eventdetails
DEADLINE TO REGISTER YOURSELF/YOUR TEAM is JAN 15! Don't wait! We start tracking our 7K steps a day on Jan 1-31!! Take steps toward a cure with us!
A Cure in Sight is joined by Emily Bingham to discuss the topic of grief.
Emily is a grief coach, fitness professional, mother of two, and widow as of March 2019, when her husband Ian passed away from Uveal Melanoma. Ian and Emily met as college sweethearts and were stunned by Ian’s early cancer diagnosis just 1.5 years after graduating college. Instead of allowing the fear of Ian’s diagnosis to dictate their future, the two got married and started a family together. Six years later, they discovered mets and decided to pursue experimental treatment at MD Anderson in Houston, TX. After 15 months, Ian passed away in his hometown of Hawaii leaving Emily with two children and a life she never imagined possible.
As Emily started to rebuild her life as a single-mom and head-of-household, she found herself overwhelmed by grief and paralyzed by the reality of her new normal. Leaning on her movement background as a former ballerina and current spin and barre instructor, she turned to fitness to cope with her grief. While verbalizing her feelings wasn’t always easy for Emily, she was able to manage her emotions by moving her body. So, in December 2019, she founded moveTHRU.
moveTHRU helps adults who’ve experienced the loss of someone special in their lives cope with grief through exercise. It’s like group grief support, but instead of talking about grief, participants move through it! Emily strives to connect anyone who is grieving, provide them with a safe & supportive space to experience their emotions, and empower them to move forward from loss!
A few highlighted moments from her episode to consider:
“What I realize now, is that the life I thought I SHOULD have been living--that I felt so entitled to--was never mine to begin with.” Emily Bingham
Fear doesn’t stop death--it just stops you from living” David Kessler
For support in grieving the loss of someone you love and have lost to OM, consider reaching out to Emily for support within her MoveTHRU community.
Facebook group for moveTHRU: https://www.facebook.com/groups/576571653182202
Emily’s website for support: https://movethrugrief.com/
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
*Don’t forget to register for our first ever annual STEPS FOR SIGHT Challenge! Register yourself and your team at the link below:
https://www.charityfootprints.com/sight/eventdetails
DEADLINE TO REGISTER YOURSELF/YOUR TEAM is JAN 15! Don't wait! We start tracking our 7K steps a day on Jan 1-31!! Take steps toward a cure with us!
A Cure in Sight is joined by Dr. Harbour in an interview “from the vault” that we wanted to bring back to you this month as a special gift!
J. William Harbour, M.D., is an American ophthalmologist, ocular oncologist and cancer researcher. He is currently Chair of the Department of Ophthalmology at the University of Texas Southwestern Medical Center in Dallas. He previously served as the Vice Chair and Director of Ocular Oncology at the Bascom Palmer Eye Institute and the Associate Director for Basic Science at the Sylvester Comprehensive Cancer Center of the University of Miami Miller School of Medicine. His clinical practice focuses on intraocular tumors, including uveal (ocular) melanoma, retinoblastoma, lymphoma and other neoplasms. His field of research includes the genetics and genomics of cancer, with a focus on prognostic biomarkers, mechanisms of metastasis, and molecular targeted therapies. He has given over 300 invited scientific lectures, and published over 200 peer-reviewed scientific articles and book chapters. Dr. Harbour founded the Ocular Oncology Service at the Washington University School of Medicine in St. Louis, where he was the Paul A. Cibis Distinguished Professor of Ophthalmology & Visual Sciences. (source from Wikipedia)
In this interview, he covers topics such as PRAME, what it means, how testing was developed; as well as other genetic markers he and his research teams have developed testing for. He explains the development of the collaborative oncology group, a team a many doctors that he is encouraging to come together to pool their research and bring as many resources to the table in studying the micro metastasis of uveal melanoma. Eye treatment he says is not the primary issue anymore; we can treat the eye. It’s the rest of the body, particularly spread to the liver or lungs or other areas of the body that are the most concerning.
He discusses early detection strategies and research, and answers a host of other questions you may have as a patient newly diagnosed with ocular melanoma, or if you just want a good solid update. More news to come in 2022 with our future online seminars!
***Saturday Dec 11 we have our second annual JINGLE MINGLE! Be sure to register at the link below!
www.tinyurl.com/wwaf5wwt
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by Ashlely McCrary, a patient with Ocular Melanoma who is part of the Auburn, Alabama grouping of patients.
Ashley shares her journey with ocular melanoma, beginning with her diagnosis in 2012 at age 42. She has been a constant and passionate advocate for raising funds to research the cause of ocular melanoma, cast light on this rare disease, and advocate for research for a cure!
Despite being diagnosed with mets last year, Ashley brings hope to the journey of fighting metastatic ocular melanoma and shares her journey with the Prame clinical trial which is still currently ongoing.
She shares the process of becoming a member of this trial, as well as her current results in her cohort of the trial.
We are so thankful for her courage and continued fight to live life fully!
“May we all embrace those "near life experiences" and not take any of it for granted” Ashley McCrary
Be sure to follow us on Instagram @acureinsight, for more stories, tips, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure. LINK TO PAYPAL OR VENMO
This podcast was hosted by Danet Peterson and produced by Agora Media.
Today, hear 10 tips compiled from our website and patient feedback to help newly diagnosed patients in navigating and understanding their initial diagnosis, especially during the first few visits with a doctor, namely:
- Take notes during your appointments.
- Stay off google and ask questions of experts!
- Be prepared for long appointments, especially at first: Bring a light jacket, water, and a snack.
- Advocate for yourself!
- Ask for medical oncology referrals
- Consider a biopsy
- Lean into social support networks
- Process your diagnosis on your timeline; it’s okay to set boundaries!
- Seek emotional and mental support from professionals as you need it.
- Maintain hope, seek joy, and look for the gifts!
Read the social media post here!
Be sure to follow us on instagram @acureinsight, for more stories and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more! Donate $10, $15, $20, (venmo) or whatever you are able via PayPal today to help A Cure in Sight in their quest to find a cure!
This podcast was hosted by Danet Peterson and produced by Agora Media.
A Cure in Sight is joined by Mila and her mom, Kezia, as well as Presley and his mom Stephanie to speak to their journey with ocular melanoma.
Here’s a short snippet of each of their stories--tune into the podcast to listen fully! Be sure to subscribe, and share this episode with your friends and family on social--and we would LOVE it if you would consider making a donation to ACIS, or creating a fundraiser on social media to help us raise money for a cure.
Meet Mila, a 14 year old who was diagnosed with Ocular Melanoma in Jan 2021, after experiencing vision loss and changes from August to November 2020. After months of being referred to one specialist after another and not having solid answers, they were sent to a retina specialist, who then sent them to Boston 5 days later to begin the process of treatment for Ocular melanoma through Proton beam therapy.
And meet Presley, a now 15 year old who was diagnosed with Ocular Melanoma at the age of 13 on Dec 17, 2018.
“Doctor’s found a large tumor in his right eye that had already destroyed his eye sight in that eye permanently.
Immediately after diagnosis, it was determined that Presley needed to undergo plaque radiation therapy of his eye.” He shares in the podcast how this procedure was extremely painful for him and a long few days in the hospital. “Presley underwent 3 separate surgeries in 10 days and underwent 5 continuous days of plaque radiation therapy in Philadelphia, he was treated at Wills Eye Hospital by Dr Jerry & Dr Carol Shields.”
He and Stephanie speak to this experience and how taxing it was on their family to receive this news, and also to travel for treatment.
Both teens expressed how this has been a challenge, but as you’ll hear throughout this episode, they rise to the challenge beautifully and truly are the definition of resilience.
A special tribute for pediatric cancer awareness, especially those in our pediatric community fighting metastatic disease or who we have lost to this cancer. You are not forgotten.
A cure in sight is joined by Paige Thompson, in an interview about her 4 year plus journey so far with Ocular Melanoma.
After being told she was too young to need her eyes dilated, Paige scratched her left eye. This thankfully led to her ophthalmologist dilating both eyes and eventually referring her to further specialists who diagnosed her with Ocular Melanoma in July of 2017, at the age of 27.
She shares that her biggest gifts in this journey have been presence with her life now, the people she’s met along the way, and the ability to focus on what she can control, and let the rest happen as it happens.
In her words, take the trip, get the dog--and GET DILATED!
Favorite Song:
Brave by Sara Bareilles Sara Bareilles - Brave (Official Video)
A Cure in Sight is joined by Carrie Younger-Howard, a patient in Arizona living with ocular melanoma.
She expresses a piece of her journey below; tune in and listen as you’re able, then be sure to share her story with those you know in hopes of raising more awareness and funding for researching and finding a cure.
- ••••••••••••••••••••••••••••••••••••••••••••••••• “It’s malignant. You have cancer.”
My stomach clenched. I sat in shock as I tried to comprehend those heavy words. “Eye. Optic nerve. Brain. Close together. I can die! My kids!” These thoughts just kept rolling together in my mind, like rocks in a rock polisher.
My journey to diagnosis was long & challenging. I KNEW something was wrong, but no doctor would listen. Even after something ‘suspicious’ was found, I was still ignored. I was slowly going blind in 1 eye.
I learned the hard way to ADVOCATE for myself when I discovered a neurologist had written in my records that I was going blind from “depression.”
I fought hard to be heard & sent to a neuro-opthomologist, although it still took more appointments to finally locate an expert in the field of the rare ocular melanoma.
I had brachytherapy in January 2012 & was told to see an oncologist.
My eye was enucleated in August of 2016 after the tumor grew back,, although this doesn’t remove the risk of future mets.
It may be an incurable cancer, at this time, but current research shows that we can have TIME & HOPE.
Time buys us the opportunity to be here for a cure.
Time buys us memories with our families & friends.
Time gives us hope.
None of us have any guarantees in life, but HOPE gives us COURAGE to face the FILTHY BEAST head on so we can live our lives to the fullest.
For now, I patch PROUDLY because eye cancer may be “unsightly”, but I AM NOT.
5 things to take away from Carries interview:
- Advocate for yourself. Bring the support people you need and push to have them there in the room with you.
- Seek out peer support. You are not alone and you don’t have to feel that way! Start a meet and greet in your area,search for those you can connect with
- Keep a miracle journal; record the moments you find that remind you there is hope along the way.
- Find the joy and the humor along the way!
- Keep living your life and don’t let this diagnosis rob you of that!
Make sure to share a favorite take away from Carrie’s episode and tag us on social!
Make sure to register for the eye believe seminar, taking place October 8-9! Registration is now open!
https://acureinsight.eventbrite.com
A Cure in Sight is joined by Dr. Scott Walter for a discussion on the importance of biopsies, and how they are being used in the field to diagnose ocular melanoma early on, as well as provide information for how patients should proceed after treatment with scan protocols.
He explains the process of the biopsy, the risks involved, and what he does to ensure minimal risk in the procedure, as well as the importance of the biopsy in diagnostic information to treat the tumor initially, or to proceed with follow up patient care.
Tune in now!
See the PDF attached for the slides referenced in the interview: https://tinyurl.com/DRwalterPPT
Thanks for listening--be sure to share in your OM communities, and with your ocular oncologist and retina specialists so they have a good reference point for sharing information on biopsies with patients!
Make sure to register for the EYE BELIEVE seminar Oct 8-9 and tell your fellow omies about it!
https://acureinsight.eventbrite.com
A Cure in Sight is joined by Devyn Anderson, who speaks about her journey with ocular melanoma. She was diagnosed at age 23, in October of 2013.
At such a young age, she was shell shocked to receive this diagnosis, and felt very “in the dark” as to what her diagnosis meant.
Within a week and a half of diagnosis her eye was enucleated and she continued through her life, getting married within a few years of diagnosis.
Despite such a traumatic diagnosis at a young age, she has maintained an outwardly positive attitude. She shares her authentic journey and the realities of the intense feelings that accompany grieving life before this diagnosis. She shares what helps her, and encourages others with OM to do the things that help them the most, especially leaning in on a support system.
Over time, she unfortunately developed mets. She has battled metastatic disease since 3 years after her diagnosis and is currently in treatment.
This is her story, which A Cure in Sight feels so fortunate she was driven to share.
Don’t lose hope! Keep fighting!
I was diagnosed with Choroidal Melanoma in March of 2008.
My optometrist found a freckle in my eye at a routine exam. I wasn’t going to say anything, but I eventually told her that I had been seeing a flash of light in my right eye for several months.
She sat me back down in the chair and took a much longer, more careful look. She said that she wasn’t qualified to diagnose anything, but that I had better have someone else take a look. She sent me to a retina specialist the next day. She actually called and made the appointment right there.
The retina specialist said the freckle was small, but that I should go to Wills Eye Hospital in Philadelphia to have them take some pictures and monitor it. Luckily Philadelphia was only an hour away from my house. His office actually called and made the appointment while I was standing there waiting to go home to tell my husband. I went the following Monday morning.
Dr. Shields came in the room and said, “We think you’re going to be alright.” But she thought I had melanoma. I had no idea you could get that in your eye. She asked me what I was doing that following Thursday.
I scheduled plaque radiation. My husband brought me, and stayed in a hotel nearby for the five days the plaque was on my eye. This was right before Holy Week, the busiest time for a church musician. I remember having to sing by candlelight, not being able to see out of one eye, and spending much of the week doing music in church.
Later that year, the biopsy came back monosomy 3, the most dangerous mutation. To this day, every time I go to Wills, Dr. Shields remarks that she can’t believe a tumor as small as mine was monosomy, and how lucky I am that we found it that small.
Early on, when I was having scans once a year and going to Wills every year, I started seeing Dr. Takami Sato to monitor for metastasis. I am currently NED 13 years later. Since my diagnosis, I have become a certified yoga teacher, a Licensed Massage Therapist, I have retired from my career as a full-time church musician, and have become a self-employed freelance musician, substitute organist/director, massage therapist, and yoga teacher.
•Barbara's story•
I was diagnosed with OM in April 2015.
My optometrist found the tumor on a routine eye exam, and then referred me to the retinal specialist.
I had a medium sized tumor with plaque treatment (4 days).
I had the muscle released to insert the plaque. I didn't have tumor testing because insurance wouldn't pay for it in 2015.
I have 20/40 vision in my right eye. I had a cataract removed, a laser surgery and now get regular Avastin shots.
I was tested for the inherited BAP1 tumor predisposition syndrome gene due to a family history of cancer and found out last spring that I have the gene.
•Dianna's Story•
Hi my name is Dianna Beck! I was diagnosed with OM in February 2018 and had enucleation at Stanford. I was 30 at the time of diagnosis and had blurry vision in my left eye for about a month before we found my tumor. It was wrapped around my optic nerve so I would have not had any vision if we had done radiation. My tumor was class 1A but PRAME+, and I found out I have the BAP1 germline mutation. It’s been about 3 years since my diagnosis, surgery, and prosthetic eye. I get MRIs every 6 months currently.
In 2014 I learned the words Ocular Melanoma.
It was August. I was in Florida visiting my parents, and I decided to get new glasses.
This time, however, the doctor found what he called a worrying little freckle, and thought it would be a good idea to consult a Retina Specialist.
That week, I went from Retina Specialist to various appointments at Bascom Palmer.
I was diagnosed with OM and my plaque week was set for August 19th. My parents lived about 4 hours away from Miami, so I had to stay at the hospital for my plaque week.
At the hospital, I was monitored daily with a Geiger meter to make sure the radiation levels were ok, and my husband was told to stay 10 feet away from my bed.
The nurses who came into the room wore lead aprons. It was an immensely lonely experience, but the staff at Bascom Palmer did all they could to make me feel comfortable in a very uncomfortable situation.
During the procedure, my eye muscle was cut to make room for the plaque. That caused more complications than I could have foreseen. The following weeks feel like a blur now, but I remember falling in love with cold compresses and watching a ton of Veronica Mars.
When I healed slightly from the radiation surgery, It was time to handle the muscles, and that following year I had strabismus surgery. Since that time, I have gone through ups and downs with how to manage.
My eyes have good days and really bad days. Sunglasses have become a permanent fixture on my face, Cocoons are the best! I hung up blackout curtains for the nighttime lights. I have learned to live in the perimeters of what my eyes can do, and thankful for each day I get to walk with my husband and remember to take each bumpy road as it comes.
I have started to sketch and play guitar. It’s not an easy journey, but I’ve learned so much going through this storm, Don’t give up, embrace your support systems, cause they are our rocks! And remember, if we are to dispel the darkness, we must only believe in the light.
“Life only gives you what you can handle, well apparently life thinks I’m a badass”
Hi, my name is Nicolette Pagliei and I am 22 years old from West Chester PA. At 22 years old I just graduated from Kutztown University in May where life was just perfect, and I was so ready to take that next step into the world, but the world had different plans for me. And even though the world was already different because of this crazy pandemic and my life changed completely on September 28th, 2020, when I was diagnosed with Ocular melanoma.
After seeing many eye doctors, I was treated at Wills Eye Hospital, where I did plaque radiation and lost most of my vision in my left eye. This experience has taught so much about myself as I was told I had cancer alone while family could only facetime in because of restrictions, this taught me strength and perseverance, and so much more. This experience has been hard, when physically I feel amazing and mentally, I must deal with vision loss, and the nerves when I have to drive in the rain or at night, and the look on people’s faces when I say that only can see out of one eye, it truly is a mind game, but I can say I am playing and forever will.
I would be lying if I said I did not worry every single day. Worry about cancer coming back, worry about something happening to my good eye, worry, worry, worry but I have to say what gotten me through is the people I surround my self with. My mom, dad, and sister Brianna are my rocks and lift me up every day, my boyfriend Nik keeps me going daily, my friends, family, doctors and nurses who take care of me and everyone in between are the reason I keep playing this game.
And although at 22 I thought life might be a little different, but I wake up every day and keep going, because I do have so much to see in this world. And Ocular melanoma would never take over my life but gives me more of reason to keep living. Eye Believe!
Do you really know your sunscreen? Learn about an all-natural, good for the earth, sunscreen that really works from Love Sun Body.
Jaime Jessen with Impact Genetics talks about ocular melanoma genetic testing and tumor mutations.
Arjun was born with ocular melanoma. His mother, Sumathy, talks about his diagnosis and how Arjun is doing today.
Presley was 13 when he was diagnosed with ocular melanoma. His mother Stephanie talks about his diagnosis, treatment, and life after ocular melanoma treatment.