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In Linda’s Words: 5th Annual CURE OM Eyes on a Cure Symposium
Melanoma has been a part of my life since 2004. November 2004 I was diagnosed with Stage I cutaneous (skin) melanoma and in January 2008 I was diagnosed with ocular melanoma (OM). In March 2008 I had plaque brachytherapy treatment to treat the tumor in my eye. Unfortunately this does not end for us diagnosed with OM. About 50% of OM cases spread to the liver, and some doctors encourage patients to have scans every 6 months to check our body for metastasis. Once metastized, there are treatments, and there is hope in the research that we will one day find a cure, but, currently, no cure exists.
Somewhere down the road after treatment for OM, I found the Melanoma Research Foundation’s CURE OM initiative. In March 2013 I attended my first CURE OM Eyes on a Cure symposium in Houston. Since OM is so isolating, I finally got to meet so many people face to face that I had become friends with online in an OM support group. I never felt like I was amongst strangers. Unfortunately, later in 2013 my father passed away suddenly and I found myself becoming my mother’s caregiver and was not able to attend again until this year.
This year’s CURE OM Eyes on a Cure symposium started with a Meet and Greet on Friday night. What a great time seeing old and new friends! Then Saturday we started with a wonderful group breakfast before continuing on to a full day of informative speakers, break-out sessions, a patient and caregiver panel and ending with a marvelous dinner. Sunday another wonderful breakfast with more speakers, break-out sessions and a wrap up.
Not only was I able to attend this year, but I had the pleasure of being on the patient and caregiver panel. It was very emotional listening to patients telling their stories of dealing with personal illness, caregivers describing their story of caring for their loved one and it was very emotional listening to stories of those who have lost a loved one.
Over the course of the 2-day symposium, the speakers took us from initial diagnosis to systemic treatment for metastatic disease. One of the sessions that I found very interesting was a session about the cluster of uveal melanoma (OM) cases in Huntersville, North Carolina they are investigating. Dr. Marlana Orloff with Thomas Jefferson University Hospital spoke to us and is committed to continue investigating this. Dr. Orloff’s conclusion is implementing spatial analytics to a rare cancer registry for the purposes of geographic pattern detection and cluster surveillance. Noticeable trends may then lead to the first ever opportunities for primary and secondary prevention.
2017 will take us to Washington, DC for the 6th Annual Eyes on A Cure: Patient and Caregiver Symposium in conjunction with MRF’s advocacy summit and hill day. We will learn up to date information about OM and then transition to the advocacy summit to meet with our members of congress and urge them to support increased funding for melanoma research. Hope to see you there!
Written by OM advocate Linda O’Brien