Meeting summary written by By Esther Damaser, Ph.D., ocular melanoma survivor and CURE OM Patient Steering Committee member.
OM first came into my life in 1980, as an unwelcome visitor to my choroid (a tissue layer in the back of the eye). After eye treatment, it showed up again in 2002, this time in my liver. Many different treatments followed. Now it is an even more unwelcome guest in many places in my body. I am still getting treatments, and have been stable for over two years. It has been 12+ years since my liver became hospitable, yet I feel fine. I am leading a life. Part of that life involves the MRF’s CURE OM initiative
In early 2015, I found myself happily in the trenches in Philadelphia at the CURE OM patient and caregiver symposium, March 6-8. What a remarkable and rewarding experience! It started with a “Meet & Greet,” at which one can renew old friendships, put faces to friends you’ve made online, and make completely new friends.
After breakfast the following morning, it was inspiring to hear the voices of those who have been dedicated to representing us and fighting for our cause: Dr. Sara Selig and Tim Turnham; followed by a statement of “Vision” by Anne Marie Montijo, a member of the Steering Committee
. She spoke eloquently about CURE OM’s accomplishments to date, and where we need to go in the future.
The scientific sessions are the “meat” of the meeting. They cover our disease “from soup to nuts,” from initial diagnosis in the eye, to adjuvant treatments, to metastases; from fine-tuned diagnosis to attempts to prevent spread, to orchestrating treatments if spread should occur. We are finding out more and more about the science of our disease, and most important is the excitement of learning how the frontiers of knowledge are being ever extended. It is gratifying to know that our community’s joint efforts through CURE OM have stretched those limits by means of research support.
One highlight for me was the talk by Dr. Carol Shields. I was impressed by the development of ways to diagnose OM earlier—when the “freckle” is smaller and smaller. Her hope is to eliminate metastasis altogether by doing so.
Another was Dr. Takami Sato’s hope of and work on developing a blood test for early detection of micro-metastases which will put another chink into the armor of OM. So many of us have had the privilege of being Dr. Sato’s patient that seeing him again as he spoke at this meeting and having the opportunity to interact with him was a special joy.
Dr. Jason Luke mentioned that while Yervoy (ipi) yields a large percentage of responders among cutaneous, there has been shown only a 5% response rate among ocular. I find this encouraging. Five % is better than zero percent, and, until now, I, at least, did not know of a single response to Yervoy among ocular people. Dr. Luke also said that in the same study 30% of ocular people showed stability. I may well be among those showing stability (2 years now after two inductions of Yervoy).
Dr. Richard Carvajal, a recipient of a CURE OM-funded award, in his enlightening report, made it all too apparent that we OM people will be saved by research, and research will be made possible by money.
Many of the scientists made reference to new work, based on an old idea of using combinations of assorted different drugs. As we all thought, it looks like combinations will be more effective than single drugs, and that work is progressing in trials now. There was a spirit of much hope and enthusiasm.
I encourage all of you to see/listen to the webcasts of these talks
. I know I will, probably more than once. The information was overwhelming in its detail and scientific complexity, but oh so welcome.
The small group break-out sessions gave us all, patients and caregivers alike, a chance to lower our defenses and share with those who truly understand our experiences, yet another chance to strengthen already strong bonds.
The “Celebration of Life,” during Saturday lunch, is a tribute to those OM warriors who have walked our trail, but who are no longer with us. It was a time for tears and for heartbreaking memories, but also for recalling the joys of having known and loved those whose images came before us, as well as the many who were not pictured.
The Patient and Caregiver Panel was another time for wrenching the heart—personal stories, told in real time, about how it is to cope with ocular melanoma: stories we can all relate to, resonate with, and share.
I must inject a personal note here: I am so very proud of the many talented, strong, intelligent, knowledgeable women who helped make this meeting a sparkling experience: Dr. Carol Shields, Dr. Lynn Schuchter, Dr. Carin Gonsalves, Dr. Rani Anne, our own Molly Stoffa and Anne Marie Montijo, and of course, Dr. Sara Selig. (OK, the men helped too.)
All these women are at the top of their game and breathtakingly inspiring. But the star of the show was a woman who has just started her game: 11 month old Giuliana Selig, born after her father and CURE OM co-founder, Gregg Stracks, passed away from OM.
The CURE OM symposium was many things, filled with tears, joy, sadness, information, energy, exultation and friendship.
Written by Esther Damaser, Ph.D., ocular melanoma survivor and CURE OM Patient Steering Committee member, in 2015. To view presentations from the 4th Annual Eyes on a Cure: Patient & Caregiver Symposium, click here. To register for the 5th Annual Symposium, click here.