Episodes
Wednesday Jun 24, 2020
Stephanie talks about her son’s ocular melanoma diagnosis
Wednesday Jun 24, 2020
Wednesday Jun 24, 2020
Presley was 13 when he was diagnosed with ocular melanoma. His mother Stephanie talks about his diagnosis, treatment, and life after ocular melanoma treatment.
Wednesday Jun 24, 2020
Welcome to The Eye Believe Podcast
Wednesday Jun 24, 2020
Wednesday Jun 24, 2020
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 danet@acureinsight.org 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!
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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.
Thursday Jun 25, 2020
Sumathy talks about her son Arjun’s ocular melanoma
Thursday Jun 25, 2020
Thursday Jun 25, 2020
Arjun was born with ocular melanoma. His mother, Sumathy, talks about his diagnosis and how Arjun is doing today.
Thursday Aug 06, 2020
Genetic test explained by Jaime Jessen
Thursday Aug 06, 2020
Thursday Aug 06, 2020
Jaime Jessen with Impact Genetics talks about ocular melanoma genetic testing and tumor mutations.
Friday Sep 25, 2020
Love Sun Body Episode 1
Friday Sep 25, 2020
Friday Sep 25, 2020
Do you really know your sunscreen? Learn about an all-natural, good for the earth, sunscreen that really works from Love Sun Body.
Wednesday Jul 28, 2021
OM Story Share: Nicole Pagliei, diagnosed Sept 2020
Wednesday Jul 28, 2021
Wednesday Jul 28, 2021
Wednesday Jul 28, 2021
OM story share: Lexi Moody diagnosed 2014
Wednesday Jul 28, 2021
Wednesday Jul 28, 2021
Wednesday Jul 28, 2021
OM Story Share: Diana and Barbara BAP1 Interview
Wednesday Jul 28, 2021
Wednesday Jul 28, 2021
•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.
Sunday Aug 08, 2021
Steven Russell Living with Ocular Melanoma
Sunday Aug 08, 2021
Sunday Aug 08, 2021
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.
Wednesday Aug 25, 2021
Devyn Anderson’s Journey with Ocular Melanoma
Wednesday Aug 25, 2021
Wednesday Aug 25, 2021
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!