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Old Fri Jul 1, 2016, 02:41 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Shikha,

Please forgive me if I misspelled your name, my eyesight is a little poor since my glasses are not near. Low platelets after transplant can be caused by a number of things, including graft failure and relapse - these are the worst case scenarios. The other two culprits are drug interactions and immune suppression. Looking at the list, Pentids and Bactrim could be causing platelet suppression as these are known side effects, so reduction in dose, or drug replacement may help - Many doctors use Pentamidine treatments to replace Bactrim, but Bactrim is more convenient and a little more reliable than Pentamidine, although Pentamidine is only once monthly inhaled at the hospital. I am not sure what would be the appropriate replacement for Pentids, but usually preventive antibiotics are pulled within the first year - so it may not be necessary to continue - talk to the doctor about this. Withdrawal of these medications or replacement could be appropriate. The other culprit of platelet suppression or destruction is immune suppression. There are a lot of different drugs that can be used. Cyclosporine is pretty common due to cost, but like all drugs affects different people in different ways. tacrolimus, sirolimus, mmf, and several others are potential alternatives. I am about 2.5 years post transplant and had low platelets - about 50k until about 1.5 years out from transplant. I was on a lot more immune suppression than i am on now.

If graft failure or a weak graft is suspected, then it is possible that a donor lymphocyte infusion might help, assuming that there is no additional disease hiding out.

A couple of other ideas for GVHD or weak graft could include things like vidaza or rituxin, but these are completely experimental with what you described and would require somebody with far more knowledge than i have to offer.

I hope this helps a little in your future conversations with the doctor. I think that you can bring up these items as questions to see how the doctor responds and see if they are able to give you a little more rationale as to the current approach and see where treatment should go.

Has your mother had a recent bone marrow biopsy and aspiration? Has she had her chimerism checked? Do you know her marrow cellularity at this time?

Dan
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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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