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Old Wed Sep 17, 2014, 04:20 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Vidaza post-transplant

I thought that I would start a new thread on my post-transplant experience due to the recent discovery of chromosomal abnormalities in my last bone marrow biopsy at the beginning of August. My doctor said that based on chromosomal changes in one of the cells analyzed from my last biopsy that he would classify my condition as relapsed MDS. Blast cells were 1% in the marrow, 0% in the peripheral, there wasn't any dysplasia to speak of in any of the cell lines, and I had 100% donor chimerism in both the marrow and peripheral blood.

I have had grade 1-2 GVHD of the gut, mouth, skin, and eyes and was experiencing week after week declines in platelets and hgb, but it was a slow, steady decline. We tried steroids for a few weeks, which did create a small boost in platelets and hgb, but not with the kind of trajectory expected.

In the middle of August, I completed cycle 1 of Vidaza, just started cycle 2 this week. The first cycle knocked down my counts pretty hard, especially the whites. I went from HGB 10.6 to 8.7, WBC 6.3 to .4, and Platelets 53k to 29k. At the start of cycle 2, I am at HGB 11.6, WBC 2.0, platelets 115k. It looks like a pretty good start.

To handle some of the GVHD issues, I have been weaning off of prednisone - down to 10mg per day, and started photopheresis twice per week for the next several weeks. I go for my 3rd and 4th treatment this week.
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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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