The Eye Believe Podcast

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 [email protected]. 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 co

*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. 2. 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 3. 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.

Welcome to The Eye Believe Podcast! A short description for what you can expect from this podcast to support you in your journey with ocular melanoma: - patient stories - caregiver interviews - The Eye Believe Seminar Recordings when we release them - interviews with the experts - mental health support from qualified experts - announcements for what's going on in the world of ocular melanoma awareness and research If you're interested in sharing your story live on the podcast, or in any other fashion, please email [email protected] to discuss availability and topics. If you are a professional who has a topic of value to add to our podcast, please reach out as well! ********* 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 Page Fronczek.

Presley was 13 when he was diagnosed with ocular melanoma. His mother Stephanie talks about his diagnosis, treatment, and life after ocular melanoma treatment.