Metastatic Melanoma Stage IV - When Optivo and Yervoy don't work

Posted by mccampbell @mccampbell, Mar 23 11:58am

Hello! I wanted to reach out concerning my 76-year-old mother and her battle with stage IV metastatic melanoma. I thought it best to connect here because this community knows melanoma and its treatments best and is on the front lines combatting this unbelievably devastating cancer. Thank you for reading and for any advice you can offer from the bottom of my heart.

Three years ago, my mom found a concerning mole in her lower pelvic region and went to the dermatologist. The dermatologist was equally concerned, and the biopsy revealed it was melanoma. After a deep incision, the growth was removed, and nearby lymph nodes were tested, with no remaining melanoma found. Fast forward to nine months ago: my mom was visiting and got sick with bronchitis. It was so severe that she went to the hospital, where they found a suspicious spot on her right lung. Her primary care physician ordered a PET scan, and the spot lit up. It was confirmed that she had stage IV melanoma in her lung. Oncology started her on a combination of Optivo and Yervoy every three weeks. Her first 3-month follow-up PET scan was inconclusive, but her 6-month PET scan showed that the original spot had doubled in size, with an additional small spot on the same right lung and another tiny spot on the left lung. These treatments weren't working. Her oncologist recommended the TIL treatment, but then it was put on hold. In the meantime, we got a second opinion at the University of San Diego, where they recommended a clinical trial, citing that TIL should be a last resort—a "Hail Mary," basically—because it's so hard on the body that she probably wouldn't qualify for a clinical trial later.

Fast forward to a month ago: she passed all the testing, and her HLA was positive, thankfully. We waited for the trial to begin at the end of March. This entire time, she never experienced pain from cancer or the immunotherapy, which we were very fortunate for. But then the pain came three weeks ago, in the middle of her back, like a knife. It progressed, and last week it was so severe that she had to go to the hospital, where she was throwing up from the pain. Scans showed melanoma on and within one of her ribs. In two days, we will find out which clinical trial arm she is selected for, and we are putting all our positive thoughts toward the two arms that include KIMMTRAX and not the "oncologist choice" arm, as that hasn't been successful.

A couple of questions: Has anyone out there with advanced stage metastatic melanoma had success with KIMMTRAX or some other treatment plan when traditional immunotherapy hasn't worked? If so, what was your treatment and dose? Also, now that she is in so much pain, could that disqualify her from the trial since she'll likely have to undergo radiation and/or surgery on the rib now? Does anyone have any insight for us? It's so difficult to learn everything at once when it's progressing so quickly.

My mom is an earth angel for both my sister and me, my dad (her husband of almost 50 years), and her six grandchildren. We need her, and we dream of a day without melanoma in her body. Thank you, thank you, thank you for reading and for any and all advice! My apologies for this lengthy write-up; I wanted to make sure I was thinking of everything. 😉

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

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