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Old Thu Jan 1, 2015, 12:07 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
@johnwc - best of luck with the transplant and a truly new year for you. The best advice that I can give is to get up every day and move, walk around, get a little bit of exercise, even if it is only 10 or 15 minutes at a slow pace. This seems to really help your whole system cope with the chemo and other drugs you will be exposed to. The other is to find food that you like or can at least tolerate, and eat what you can comfortably. Lastly - don't spare the anti-nausea or pain killers as needed.

@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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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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