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Bailie,
I don't envy the position that you are in by having to make decisions that sacrifice quality of life for treatment. That being said, I am with Ray on this one that if you have the physical, mental, and emotional capacity to go in for the fight, that I would be swinging until the doctor says that there is no chance of recovery, and that might not stop me there.
Neil's question about Sprycel is a very good one. Do you have any data on whether it is worth the headaches? Literally? There are a couple of clinical trials that have been successful at lowering blast counts and improving blood counts pre-transplant using HDAC inhibitors in addition to Vidaza - I think the drugs were Pracinostat and Vorinostat (sp). As I recall, the side-effect profiles did not change much from straight Vidaza, but the response rates were exceptionally high and cleared the path for transplant, or in your case maybe a DLI.
Getting a second professional opinion may help you with choosing your next path. Obviously most of us on the forum are not doctors, but we do understand the difficulty of the decisions you have to make.
You are very strong, attitude and all, and ultimately it is your strength that will carry you through.
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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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