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Join A Cure in Sight, an ocular melanoma foundation, in sharing stories + raising awareness for OM patients and their families. Here we share information and insights on treatment, research, and living with ocular melanoma.
Episodes
Thursday Sep 09, 2021
Thursday Sep 09, 2021
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
Monday Sep 20, 2021
Monday Sep 20, 2021
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.
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“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
Friday Oct 22, 2021
Friday Oct 22, 2021
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)
Wednesday Oct 27, 2021
Wednesday Oct 27, 2021
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.
Tuesday Nov 23, 2021
Tuesday Nov 23, 2021
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.
Wednesday Dec 01, 2021
Wednesday Dec 01, 2021
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
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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.
Thursday Dec 09, 2021
Thursday Dec 09, 2021
*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
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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.
Saturday Dec 18, 2021
Saturday Dec 18, 2021
*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/
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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.
Tuesday Dec 28, 2021
Tuesday Dec 28, 2021
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!
or 
to learn more about our first annual #stepsforsight2022 awareness challenge (and r e g i s t e r!)
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!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!
Sunday Jan 09, 2022
Sunday Jan 09, 2022
*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
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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.
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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.