Hit everyone,
After 17 days on Zelboraf, I am doing well. I saw Dr. Wolchok this past Thursday. As soon as he walked in the room, he said “wow”!
Since my mets are mostly on my face, it’s easy to see noticeable regression/flattening of mets. And the several scalp mets that were (for the first time in 2 yrs.) big enough to light up on PET, are all completely flat. On some, the pigment even disappeared. He said the pigment might not all disappear on my face, even if the Mel completely resolved. I can feel that the Mel in my ear has gotten much smaller and I can hear out of it. Must see the ENT to confirm/see what’s left.
As for side effects, I’m getting numerous skin tags or small warts around eyes and just found a big one behind my knee today. Some leg pain and mild fatigue. I did start taking Benfotiamine after reading Snickers’ recommendation, who knows’ maybe that’s helping. I told them that I have to get rid of my “Yervoy mentality” that says that side-effects = response. He laughed but for those of you on ippy did say that they’re revisiting that theory.
I asked him at what stage in past 2 years did he think I went from BRAF – to positive, and he THINKS it’s more likely it was a false negative…they might have tested healthy tissue– but really, who knows? Who cares??
I know I might develop worse side effects but for now I’m feeling surprisingly good.
My thyroid FNA was negative! (And yes, when they stuck the needle in twice and wiggled it around, it hurt).
Al, I hope I’m following in your footsteps!
Love to you all,
Karen
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