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Old Wed Mar 28, 2012, 03:04 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Pastalover,

I didn't see a diagnosis for you, but I am getting a small sense of myelofibrosis due to spleen swelling or pain on the left side along with a bleeding disorder. I am not sure, but have you been tested for JAK2? If you have this, it is possible you can get in on one of the clinical trials for the JAK inhibitors. They have demonstrated pretty good success at managing spleen size.

There are trials all over the country for these products as they rush to be the first approved drug on the market. Trials usually have most expenses paid for the treatment and follow-up.
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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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