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Old Sun Jun 17, 2012, 11:36 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
End to watch and wait?

So I have been on the non-regimen of watch and wait for almost exactly 2 years. My doctor told me that I would probably know when it was time to begin treatment, and I think that I am there. Last week's CBC came out at:

WBC 4.8
Neutrophils 3.5 - 73%
Lymphocytes 24%
HGB - 12.3
HCT 38
PLT 20

Complicating factors - Trisomy 8, grade 2+ to 3+ reticulin fibrosis.

This is the first time my HGB has dropped below 13.5, though I don't really notice any impact - i did walk almost 7 miles yesterday without rest during or after the walk..... it is also the lowest my platelets have been. If somebody looks at me funny I bruise these days. WBCs have been pretty steady.

We have found 3 potential 10/10 donors, and my sister is a 9/10 match. I am considering beginning treatment with vidaza or dacogen to start and then moving to transplant.

My concerns focus on the marrow fibrosis and that i have found very few studies that determine if vidaza or dacogen improve marrow fibrosis, whereas revlimid and thalidomide, and even danazol have at least anecdotal references to improving marrow fibrosis.

Any thoughts? Am I too concerned about the fibrosis part of this equation? I know that collagen fibrosis is considered worse than reticulin fibrosis when it comes to transplant outcomes.

Thanks.
__________________
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.

Last edited by DanL : Sun Jun 17, 2012 at 11:39 AM. Reason: improvement
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