I want to share my husband's experience because I've seen questions about this and I think I even posted a similar question once. After being diagnosed stage 3C, NRAS positive, he went on ippy (Yervoy) and after just 3 months it metasticized to the liver. At that point he stopped ippy and went on PD-1 (Keytruda). He had many symptoms come and go– extreme fatigue, nausea, itchy skin, metalic taste, GERD, fevers, night sweats –it was hard to sort out whether these were side effects of the Keytruda, the prednizone that was presribed to deal with the symptoms, or the cancer. After 6 doses of Keytruda, scans showed that the liver lesions had increased. Fortunately, we got him into the TIL program at NIH which meant that he needed to stop Keytruda and all steroids. He went through the surgery at NIH to harvest the lymphocytes from his lymph nodes, but right before starting the second part (chemo) they did scans and lo and behold they showed that his liver lesions had decreased significantly. This was now nearly 2 months after being off Keytruda and a month after scans had showed no change. They sent him home from NIH, since his immune system was fighting the cancer on its own. No one can really provide an explanation, but it seems that maybe Keytruda can have a delayed response, or going off it may have triggered something.
I hope this is helpful to all who are out there waiting and questioning whether its working. Sometimes you have to make hard decisions–we made the decision to stop Keytruda and pursue TIL rather than risk further progression, but it seems it may have been working after all. Also the inflammation seems to have really flared up around the 6th dose right before it started working–that's when he had the scans and felt the worst. We know this fight is far from over but are now very hopeful to finally see shrinkage.
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