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Old Wed Sep 17, 2014, 06:01 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Steve,

I am feeling pretty good overall. I was a little on the weak side for a few days, but not much to complain about, still able to do most of my activities, just a little more nap time.

Based on the cell level analysis, it looked like about 1 out of 21 cells reviewed had the chromosome changes - several trisomies -

My doctor's experience with Vidaza post-transplant is pretty positive and he suggested that because of the graft versus mds effect of the donor's marrow that Vidaza may be used to promote better functioning of the immune system to eradicate the remaining MDS, so it could represent a cure, unlike pre-transplant Vidaza.

As for what's ahead, we still need to fight off the GVHD that I am experiencing, and supposedly Vidaza can help with that as well. We have discussed 4 to 6 cycles initially, but I am prepared for longer as needed. I suspect a bone marrow biopsy is probably going to be ordered for mid-October just before cycle 3 just to see where we stand.

DLI and transplant seem like next steps if the MDS clones grow, but the doctor was reluctant to go there just yet in the absence of overt dysplasia and elevated blasts.

At this time, I am very optimistic, am getting stronger, and have put back on 30 pounds since transplant, so I am about back to my pre-transplant weight - probably thanks to steroids, but I will take it.
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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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