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Dear Freedom,
I find it alarming that your doctor has given a time line, no doctor including the specialists in these diseases knows what is going to happen with any one patient. Too many variables. There are too many people on these forums that have and continue to beat the odds everyday. I am one of them, I have responded to a drug with brillant results. I am in a drug induced remission for 3 YEARS after recieveing regular blood transfusions. What should that tell us?? It means that there can be a cure in the future, that the body can respond, that there is HOPE. That you have to try and find the treatment that just may have the same fortunate results that I have. That no doctor can predict who will respond and who wont to any given drug/treatment. And you don't throw in the towel based on the opinion of one doctor or the failure to respond to one treatment. You keep trying, there is hope because if it can happen to one it can happen for others.
I would strongly suggest that you ask for a referral to one of Canada's Centres of Excellence for MDS.
Canada
Princess Margaret Hospital
Toronto, Ontario, Canada
Karen Yee, MD
Toronto Sunnybrook Regional Cancer Centre
Toronto, Ontario, Canada
Richard A. Wells, MD
University of Toronto
Hospital for Sick Children
Toronto, Ontario, Canada
Yigal Dror, MD
It has been my experience that these specialists don't give up so easily (I go to Sunnybrook) and they have a far more optimistic approach to treatment. I personally wouldn't even consider seeing a local oncologist, knowing that they don't have a tenth of the knowledge or the experience of dealing with many MDS patiences everyday.
Cheers,
Lynn
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