CommunitiesUveal MelanomaHas anyone tried TIL therapy for uveal melanoma lung metastasis?

Has anyone tried TIL therapy for uveal melanoma lung metastasis?

JS

Community Member

a month ago

I have Uveal Melanoma it has been very slow growing but it metastasized to my lungs, which I understand is even more rare. Around 2004 or 5 I had a freckle found behind my left eye and I was sent to the Midwest Eye Institute in Indianapolis, Indiana. I was checked every 3 months then 6 then annually and really didn't worry about it at all. I was told there was 1 in 10,000 chances it would ever change into a tumor. I made a very big mistake and stopped going for my check ups, in 2013 I was having vision problems and found that I had a very large tumor behind my left eye. I had the plaque radiation, it was painful and I lost the vision in my eye but it was successful, and the tumor is still gone. I religiously kept every appointment for my lung and liver checks, they spotted lung nodules early during my first diaognosis back in 2013. In 2021 they found that one of the lung nodules had grown some, so a biopsy confirmed it was also melanoma. I had 1/2 of my right middle lobe removed but unfortunately they found cancer cells were left. With Pet Scans every 3 months late 2024 some nodules had grown slightly I started immunotherapy (Veroy and Opdivo for 4 treatments and then just Opdivo now. My last scan has shown more growth and lit up more so I have been discussing with the Cleveland Clinic a clinical trial called TIL (tumor Infiltration Lymphocyte therapy). I am nervous about the process, especially the thoought of high doses of chemotherapy for a week. Has anyone else heard of this or have had this therapy?

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CA

Community Member

a month ago

TIL therapy is an emerging treatment that some patients with metastatic melanoma have explored, and it's completely understandable to feel nervous about such an intensive treatment process. The decision to consider clinical trials often comes after other treatments haven't provided the results hoped for, and connecting with others who have experience with TIL therapy could provide valuable insights and support during this challenging time.

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