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Old Tue May 14, 2019, 02:46 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 574
Meri,

Congratulations on 2 years. I am sorry that I did not see this sooner. The questions I might have asked include progress of GVHD, current level of medications and whether they can be reduced, check on the status of vaccinations, especially in connection to the recent outbreaks of measles, etc. I would also ask if there is any benefit to potentially changing up drugs to something other than cyclosporine. The only reason I would ask that is that i have had gut GVHD since transplant (5 years now), and recently added MMF to my regimen, and suddenly everything is normal for the first time in years, which is an odd experience. i almost forgot what normal felt like.

Hopefully you got great answers during your last visit.
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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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