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Old Sun Dec 7, 2014, 12:08 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Paul,

Whenever something changes, a bmb/bma does seem to be in order to confirm that nothing has changed, or that it is time to pursue other options. Vidaza can take 4-6 cycles to begin showing results, so getting started earlier and having supportive care early may be helpful. I was in the watch and wait mode for almost 4 years with no supportive care, then one day in November of last year it all changed, HGB dropped quickly and I started Vidaza for a couple of months, then went to transplant in February. I relapsed in August and have been on Vidaza for 4 months with pretty good results - I am on a 5 day regimen, but it is the 7 day dosage compressed into 5 days.

I have seen and heard of people staying on vidaza for as long as 5 years, but that is pretty rare. There are also several clinical trials that are moving along nicely and may give additional options.

I wish you the best in choosing the next steps.
__________________
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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