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Old Thu Mar 1, 2012, 01:32 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Catherine,

Watch and wait is the worst good news that we can hear. On the one side it is fantastic because your disease is a) not progressing quickly and b) doesn't need to be treated aggressively. The downside is that you have to learn to live with the relative uncertainty that it brings - it could get worse at any time.

I have been in watch and wait mode for almost 2 years and live with very normal red and white counts, but my platelets hang out between 20k and 35k pretty consistently. Right now, watch and wait sounds great and my patience and familiarity has grown with the disease, so it is a little less unsettling.

I go in to get my blood checked every month or two, get a biopsy every 6 to 8 months.

dan
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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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