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Old Mon Aug 1, 2016, 03:22 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
NM Runner,

I cannot answer the question about whether you have MAA or a hematological disease, but if you suspect that to be the case, I can give a very high recommendation for the colorado blood cancer institute CBCI at st luke's presbyterian medical in denver. They have been wonderful to me and have been patient with all of my questions and thorough (at least to the best of my knowledge) in their testing. I had a bone marrow transplant in 2014 but was originally diagnosed with MDS in 2010, so I never felt pressured to seek out a particular solution other than to keep an eye on the disease and that I would know when it was time to seek a different treatment option, which amazingly was true. I knew almost to the day when my marrow had changed for the worse and that I needed to move forward with treatment/transplant. I had visited 3 other hematologists for second opinions and felt that the time and respect I received here in Denver was above and beyond the others, and this included City of Hope in California ( a very close second - i really did like their approach and philosophy of treatment) and Mayo Clinic in MN. Along with my comfort with the doctors, the team based approach and level of experience of both the doctors and nursing staff is what pushed me to go with CBCI here in Denver, not to mention that their results for transplant were very good.
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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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