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Clinical Trials Considering or participating in research studies

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Old Thu Apr 3, 2014, 03:15 PM
Wife of Diver Down Wife of Diver Down is offline
Join Date: Mar 2014
Location: Miami,FL
Posts: 13
How do I find out clinical trials for persistent MDS post MUD?

My husband underwent MUD on 2/21 for high risk MDS and BMbx shows persistent disease with 10 % blasts and chimerism 85% donor; He has acute GVHD of the skin involving 80% of his body; For now docs here recommend photophoresis and want to taper him off the steroids as quickly as able to try to maximize possible GVL effect;

How can I find out about other treatment options/clinical trials? Does anyone know of any for persistent disease post MUD or recommend a specific expert clinician for consultation?

Wife of diver down - still fighting!!
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Old Thu Apr 3, 2014, 11:22 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587
You can certainly go to the clinicaltrials.gov website which has all of the official trials. I have had pretty good luck when inquiring about trials by just calling the clinical trial coordinators at the larger institutions and asking them what they might have available as another approach that may open up doors that aren't explicitly listed.

With persistent high risk MDS, one approach that I have seen used successfully is treatment with Vidaza and tapering off the immune suppressives, but there really isn't any good data on this approach.

sending you well-wishes.
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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