Lisa,
Thanks for getting back to me.
I'm 45 and in good health with a low risk MDS (RA - but my doctor doesn't like to use that table). I was referred to Princess Margaret hospital (PMH) by my local hospital (we live close to Toronto). Princess Margaret is a teaching hospital - part of a network of hospitals and associated with the University of Toronto. One of the first questions we asked when we went to PMH was why they weren't a center of excellence - the doctor smiled and said that they don't like to brag about their capabilities. PMH and Sunnybrook seem to work closely together - in September we went to a patient education day put on by the AAMDS Association of Canada (
http://www.aamac.ca/) - my doctor and the MDS specialist from Sunnybrook were there and presented talks. Although Sunnybrook is the center of excellence they do not perform the transplants there - patients get sent to PMH. From their web page it looks like PMH does have an excellent record and lots of experience with transplants. I'm not convinced it would be helpful to make a change at this point.
The match is perfect according my doctor. (From what I understand all sibling matches are 10/10 HLA but still with risks of GvHD.)
I haven't had any transfusion yet and I would prefer not to. It seems to make sense to wait as long as possible as long as I can stay in good health by exercise and effective Eprex. My next visit is in a couple of weeks and I want to discuss the pros and cons of timing with him. I tried finding some information about the researchers from Cornell but couldn't.
Mary,
Thank you for your story, it is so encouraging to hear success stories.
Mark