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with the extramedullary hematopoesis, have they tested your mom for presence of jak 1 and jak 2?also, have they tested for any other markers that might indicate myelofibrosis? there are a handful of new drugs that seem to have a positive impact on quality of life.
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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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