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It is really difficult to predict how a patient is going to respond to treatment in terms of quality of life. I have met several people in the past 5 years who have done very well with Vidaza and Dacogen and what seems to be a smaller group of people who have seen a reduction in quality of life that is tied to the treatment. The quality of life differential is usually tied more to progression of the disease as opposed to taking treatment (this is my completely unqualified opinion based on observation and conversation) I have had 10 cycles of Vidaza and really only experienced about 3 days per month where I was a little run down - oddly enough it was during the 3rd week of each treatment cycle. The other consideration is that typically if you are going to get a response from Vidaza or Dacogen, it usually happens within the first 60 days for Dacogen, but can take up to 6 or 9 months to get a best response from Vidaza, meaning that it might be better to get ahead of the disease with treatment.
to sum up - quality of life with the couple of drugs that are most commonly used is not usually affected too much for most patients - that is, unless getting to and from clinic is bad. The drugs used are pretty well targeted and are not systemic, so the impact is generally manageable. Lastly, listen to the doctors, ask questions, and see if you can talk to people who are currently receiving treatment so that you can get a real life narrative.
Best of luck!
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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