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Patti,
It is nice to see Dean's numbers rebound.
The JAK2 mutation is not really considered good or bad, especially in the presence of already identified MDS. If the JAK2 mutation were present, it may confirm Myelofibrosis. As Birgitta noted, many MDS patients have marrow fibrosis (scarring), including myself, and it is basically the result of your marrow having to work really hard to keep up, and may have to do with an overproduction of bad platelets (ironically).
If Dean had the JAK2 mutation, he may have been eligible to take one of the newer myelofibrosis drugs like Ruxotlinib, which helps with MF and has some effectiveness in reducing spleen size for myelofibrosis. I don't think it has been tested too much in overlap syndromes where the line between MF and MDS is blurred. These drugs can really do a number on platelets is some of the concern.
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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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