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First official update in a while - 90 day biopsy came back clean, we hit day 100 on Friday. I do have a little bit of GVHD of the gut and skin, but both are limited in scope and well controlled with Budesonide and Lidex skin cream. We are going to start dropping tacrolimus slowly here starting tomorrow and see how the system responds this time around.
I am still on daily magnesium - 4 grams per day, acyclovir, ursodial, budesonide for the gut gvhd, desonide and lidex for the skin gvhd, voriconazole, and a couple of other things for digestion.
Initial endocrine workup looked pretty good - may be on the lower end for vitamin d. All other chemistries and functions look pretty good, which I am happy to report.
It is amazing both how quickly and slowly 100 days passes. It seems like yesterday, but the feelings at the time seem an eternity away.
I once again cannot say enough for the support of my doctors, nurses, and of course the marrow forums community.
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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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