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Old Sun Sep 29, 2019, 05:44 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
If his marrow is described as strong (a term I have not heard) and there is no evidence of disease, then the conclusion that might be drawn is that there is either GVHD or too much immune suppression, or it may be that one of the medications is having an unintended consequence. Do you know which medications he is taking for GVHD?

I know that I am very sensitive to MMF and it knocks down my counts a lot, as does sirolumus, but I do alright with tacrolimus and prednisone. I am not saying that my experience with these drugs is normal, but it is possible that your father is having a poor reaction to one of his immune suppressive drugs.

Ironically, it is possible that he has GVHD and that he requires more immune suppression.

All of this is with the assumption that strong marrow means proper cellularity, proper engraftment statistics - like what percentage of cells are donor vs his own, etc.

Do you know where his counts are? There are many cases where lower than "normal" is ok and a "new normal" as long as they are above critical thresholds.

Getting medications right is as much art as science and has a lot of trial and error until it is right for the individual. We all react differently to the different medications and combinations, so adjustments to dosing, changes in regimens are frequently necessary. It may be frustrating, but it is unfortunately a necessary part of the process.

If you look at the effectiveness of different medications, there are very few that work on more than about 50% of patients without unintended side effects.

Lastly I would think that if your father were having secondary graft failure, that the marrow would not be described as strong, which is why I made the note above about cellularity and donor engraftment.

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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