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Melanoma Awareness Month: My Journey with a Rare Cancer  

Guest blog from Sheila Levine, ocular melanoma survivor who shares her continued journey with melanoma and why she fights to advocate for prevention and awareness: 


 When I was first diagnosed in 2008, I had never heard of ocular melanoma. Melanoma in the eye? How does that happen? How did I get it? What can be done for it? My regular optometrist discovered it and immediately sent me to a specialist. After a thorough eye exam, I was told I would have to have my eye removed. And I was led to believe that once my eye was enucleated, I would be home free. I was never told that this metastasizes 50% of the time, nor was I told that I should get periodic scans. As it turned out, I needed a CT scan in 2011. Although it had nothing to do with my former breast cancer, my breast surgeon ordered the test. I should have been having them periodically, but my eye surgeon never ordered them. At first, there was just a hint of something growing, but after having another CT scan two months later, metastasis in the liver was found. Apparently, this is the most common place where ocular metastasis is found. This also pushed me into doing research and being my own advocate. I didn’t rely on just my surgeon’s opinion. The internet became my go-to research place.                                                      

I did question the original surgeon as to why he never ordered scans. His attitude was criminal. He basically told me that he was told at conferences that it wasn’t needed. Once ocular melanoma metastasizes, there is nothing else to do. He had me dead before I even started treatments. He was extremely angry that I was questioning him and, basically, decided to stop seeing me. So, after all this, I got on the computer and started my research. That’s when my true education about ocular melanoma began. This is where I found Dr. Sato and the team at Thomas Jefferson University Hospital in Philadelphia. I immediately called for an appointment. After meeting with them, my anxiety lessened and the knot in my stomach loosened. There was a plan. No cure, but treatment. My mantra became… for every year they keep me alive, something else will come down the pike. And it did. After a year of immunoembolizations, I moved on to Sirspheres. I did get nine months of treatment-free life from that.  After that, I was involved with many different trials and treatments. I even have had surgery multiple times to remove brain mets and many cyberknifes to get rid of brain mets. In March 2019 I became the first patient to be part of a new trial for IMCgp-100. It involved being in Philadelphia every week for treatment, but it was working. After three years, my tumors began to grow again, so I had to find something else. However, the good news is that the treatment was approved in early 2022 as Kimmtrak. This is the first new treatment that has been approved and, hopefully, more will come down the pike soon.  But, for me, I had to find something else. Dr. Sato put me on a new trial called Leap Therapeutic. It involved Keytruda and TRX518. After a year, it was discontinued as a trial, but, for some reason, I was the only one to benefit from it. Luckily, the company continued to send Dr. Sato the meds and, as of today, I am still on the trial.

I am so thankful to every doctor and every company, and especially CURE OM (part of the Melanoma Research Foundation) for continuing to look for new treatments and, hopefully, a cure. Without them, I know I would not have survived this long. I am so grateful.

Sheila Levine 

The MRF is committed to increasing awareness of melanoma, sun safety and how important it is to #GetNaked for a monthly self-skin check and yearly full body exam by a board certified dermatologist. Your support makes this work possible; please consider a tax-deductible gift today: