I'm in NYC on a doctor tour. On Monday I saw my dermatologist. He was concerned with the path my skin was taking (basically crumbling) and how much pain I was in, especially at night. I have a new cream and a new lotion, plus a pill I take at night called Doxepin. It's too soon to see if the cream and lotion are working, but the pill puts me in la-la land so I have no trouble sleeping. That's good news.
I saw my oncologist Tuesday and he gave me a big hug. We discussed all my concerns and he offered a panoply of ideas to ameliorate my gvh skin woes, from the inside. Some of the treatments would necessitate week-long stays in NYC, which I don't want to do. Plus, I'd have to get a port because my veins are worthless. The idea of a port 3.5 years after my transplant makes me feel sad and defeated. I know it shouldn't, but it does.
We decided to take the simplest measure first, take me off Gleevec and put me back on my old friend Sirolimus aka Rapamune. I'll continue with Cellcept, another immune suppressant.