Quote:
Originally Posted by DanL
@Ray, 6 clinical trials is a lot - I haven't seen the full list of what you have tried so far, but a couple that are gentle would be photopheresis - I am currently doing that 4 days per month and it seems to have begun controlling my gvhd of the skin and gut - although I have also been taking entocort intermittently. For a while I was on tacrolimus + sirolimus and have also tried prednisone. As you probably know, I had a relapse a few months ago that we have been treating with Vidaza. I am still 100% donor in both the marrow and peripheral blood and seem to be responding to treatment.
Here are some of the current treatments that are tried for refractory cases: mycophenolate mofetil
Anti- IL -2
ABX-CBL
Etanercept
Denileukin diftitox
Pentostatin
Brentuximab
Nilotinib
There are several others out there, but these are a few that I was able to locate. There are just so many combinations and possibilities, and one or two of them just might work. It looks like the Hutch up in Seattle is kind of leading the way on GVHD research. You might want to check their site out for their GVHD trials.
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Hi Dan
The trails I was on were not for GVHD. After transplant I was on mycophenolate mofetil but they stopped it. Currently I am on tacrolimus .5 mg daily. I started with 50 mg. prednisone tapering down to 10 mg. daily for the indefinite future. After 2 months of not eating the gut lining seems to be repaired enough that I am able to eat again. I am also on 2 liters off TPN intravenous that should stop in a week or so. The doctor is taking a wait and see attitude to see if the tac and pred will control the symptoms. My skin is flaking off and looks like a snow storm. Gut is more of a concern than the skin, mouth is OK so far. I will look at Hutch site.
Thanks
Ray