This post is for anyone navigating clinical trials and treatments in the ocular melanoma space. I am HLA negative, although I still don’t know what that means. While I never received treatment from Dr. Richard Carvajal at Columbia in NYC, he consulted on my case many times and helped us navigate options. He is no longer there, but I hear Dr. Kahn (NP Diana McConnell) is fantastic.
May 16, 2013, Porter Hospital, Dr. Peter Hovland, Denver, CO: Original diagnosis of ocular melanoma stage 1A and treatment with radiation plaque from May 31, 2013—June 7, 2013
April 2014: negative liver ultrasound
November 25, 2014: multiple liver mets (12+) discovered in ultrasound; biopsy on November 28 confirmed stage 4 ocular melanoma.
January to August 2015, Memorial Sloan Kettering, Dr. Andrew Postow (cutaneous), NYC: 1st clinical trial – oral; treatment with MEK162 (trametinib), Uprosertib added in June due to growth of liver lesions. Both stopped in August due to growth.
September 2015, UCHealth, Dr. Rene Gonzales (cutaneous, retired), Denver, CO: 2nd clinical trial – infusion; treatment with Yervoy and nivolumab – stopped due to GI toxicity after first treatment.
November 17, 2015, Sky Ridge, Dr. Charles Nutting, Lone Tree, CO: Radio-embolization to the right lobe, good response. This treatment is FDA approved for metastatic colon cancer, but we were able to get insurance to approve it for me (it stabilized my liver for 3.5 years). We left the left lobe untreated so we could have a baseline for future treatments.
June to August 2016, UCHealth, Dr. Rene Gonzales, Denver, CO: 3rd clinical trial – infusion; Glembatuminab – stopped 8/16 due to tumor growth (right lobe one lesion + left lobe).
September 2016, Sky Ridge, Dr. Charles Nutting, Lone Tree, CO: Radio-embolization to the left lobe, good response.
May 2018, UCHealth, Denver, CO: Gamma Knife for brain lesion, good response.
June 2020: Sudden growth in tumors in the liver.
July to September 2020, UPMC—Pittsburgh, Dr. Udai Kammula, Pittsburgh, PA: 4th clinical trial – TIL Therapy; Laparoscopic tumor removal, leukapheresis, chemo, TIL infusion, IL2, good response.
September 17, 2021, UPMC—Pittsburgh, Dr. Udai Kammula, Pittsburgh, PA: surgery to remove remaining tumor and cleared all margins to be NED (no evidence of disease). Whoop!
[…] This post is specific to my fourth clinical trial done at UPMC—Pittsburgh in 2020. If you are newly diagnosed with ocular melanoma, my post called The Best Worst Thing recounts my initial diagnosis and treatment. I always tell people. you have to be very careful in your treatment selection as some treatments might make you ineligible for others. I have been incredibly blessed to have a team of doctors all over the country, including my father who is an internist, working together to find the best possible treatments options for me. Get a second opinion. Build a team. Be the squeaky wheel. Make sure all the OM docs know who you are. You can see who many of those doctors are in my post about My Clinical History. […]