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Bailie I am in your camp. My morbid math said at diagnosis I had a 50% chance of living 4 months. At my age with high risk MDS RAEBII with SCT I have 56% chance of surviving 1 year and 28% chance of living 3 years. If I survive for 3 years there is an 80% chance of living for another 10 years. My 1st re-birthday is next Tuesday so I made the first check point and have beat the odds on quantity of life. As for quality I did hit some bumps in the road so for the past year I had 4 bad months and 8 reasonably good ones, maybe not as good as pre-MDS. For me, I have experienced no real pain, just uncomfortable. If I were to die now I had a good life so far and I don't expect it to go on forever. It would be nice to die as a happy and healthy 100 year old. I am still satisfied with my decision.
Data, I understand your reluctance to undergo a SCT. It is a risky procedure with about a 25 to 50% cure rate. Almost all transplant patients have side effects of one sort or another. You would be in the majority by not having a SCT as for many reasons about 5% of MDS patients have SCT. I know of people who have survived 5 years on Vidaza with minimal complaints. It is a very personal decision. With your analytical mind you will come up with the right decision for you.
How am I going to celebrate my 1st re-birthday? 3 hour round trip to hospital with 6 hours worth of tests. Fun!!!!!!
Ray day+362, BSEE MSCS, age 74, retired since 1993.
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