Amy and I visited the dermatologist, Dr. S., and the transplant doctor, Dr. C., yesterday. The mystery rash I have remains just that, a mystery. I had a biopsy a couple weeks ago and the initial tests came back reassuring (no sign of the CTCL returning or graft vs. host disease). We are still waiting on a more advanced portion of the biopsy, which will hopefully be in early next week. The experts are still trying to determine whether or not the inflamed skin contains my cells or Amanda's (my donor's). It was explained to us that this is very difficult because the majority of cells they are looking at in the biopsy will be XY (male). The XX (female) cells should only be in the blood. So, a skin biopsy will naturally have tons of XY. If there are XX cells they are going to be hard to find. In essence, the pathologists are looking for an absence of the XX cells, if that makes any sense. At least I think that is what is going on. It is clear now why so many experts are stumped.
I should note there was one worrisome issue that popped up in an older biopsy: Some of the cells were of a clonal nature. This can indicate cancer - either lingering cells from pre-transplant that haven't quite died yet or new ones that are waiting to emerge and bring us back to square one. There are also inflammatory skin disorders that manifest in a clonal nature. We'll choose to believe that last one for now :)
Regardless of the biopsy results the doctors want me to start UVB treatment again. This is light treatment that uses a very narrow band of ultra-violet light. I had at least 100 UVB treatments during the run-up to transplant. A lot of early-stage CTCL patient are prescribed this and it keeps the CTCL at bay. It worked wonders for me until it didn't! This round is intended to subdue the current rash. I'll try to remember to take a picture of the booth next time I go. I feel like I am in the Quantum Leap opening credits when I'm in it. As seen here (I bring my own dry ice to make the experience more authentic).
|Don't worry, I wouldn't do a post without an adorable photo of Briar. I know why you come.|