Hi all,
I celebrated six years at stage four and still here this month. That felt good. My current update, however, is a mixed bag. Last December I had gotten completely clean scans. Prio to that, for about a year, my scans were either improving or clean. I had been taking Tafinlar/Mekenist as well as infusions of Keytruda. In January, I stopped taking Taf/Mek to see if maybe I was all clear. I immediately grew several brain tumors (one quite large) in a short time which was revealed in scans on Feb. 27th. I immediately restarted Taf/Mek and had surgery for the largest tumor on April 16th. I had no radiation. I had fresh brain scans done June 18th. Those scans were compared against the Febraury 27th scans and showed no tumors. More recently, I had a body scan (neck, chest, abdomen and pelvis) on July 11th which was clean. On that same day I alerted my oncologist to a lump on my arm near my armpit which he said was suspicious. On Monday, July 16th I had it excised. Just heard today that it was melanoma inside a lymph node. It wasn't clear to me if it was a tumor or individual tumor cells which would be an important distinction. But I have well exceeded the average time for Taf/Mek to be effective anyway so time to look for something else. Any suggestions? I am thrilled to not have active disease in dangerous locations at the moment. My oncologist is recommending re-starting Keytruda but it seems clear I was not a responder. Maybe I was a "partial" responder, but that doesn't quite cut it for long-term.
I hope you all are managing well. I hope my experience will be useful or informative for someone.
Cheer!
Maggie
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