The Eye Believe Podcast

OM Story Share: Diana and Barbara BAP1 Interview

•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.

OM story share: Lexi Moody diagnosed 2014

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.

OM Story Share: Nicole Pagliei, diagnosed Sept 2020

“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!

Love Sun Body Episode 1

Do you really know your sunscreen?  Learn about an all-natural, good for the earth, sunscreen that really works from Love Sun Body.

Genetic test explained by Jaime Jessen

Jaime Jessen with Impact Genetics talks about ocular melanoma genetic testing and tumor mutations.

Sumathy talks about her son Arjun’s ocular melanoma

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

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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*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.

Stephanie talks about her son’s ocular melanoma diagnosis

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