Transplant timing

[MarkBuchanan]

This is a great place to read about experiences of others both good and bad.

I was diagnosed with MDS in April/07. I have a sibling match and I'm on Eprex right now but it doesn't seem to be very effective. The transplant feels like a freight train that is eventually going to crash though our lives.

I feel like we are in good hands at Princes Margaret Hospital in Toronto where the transplant will take place. My sibling match - my sister works as a nurse at Sunnybrook Hospital also in Toronto. Sunnybrook is a center of excellence for MDS. She recently attended a teleconference lecture done by researches at Cornell who study MDS/AA/PNH. Their opinion is that if there is a match the BMT should not be put off but done right away. I'm looking for resources/opinions/information that I can help us make as good a decision as possible as to when to do the transplant. My doctor right now is saying to put it off as long as possible but should we reconsider this?

Mark

[Lisa V]

Mark, how old are you? How close a match is your sister? What type of MDS do you have and what is the prognosis without a transplant? If your doctor feels it's better to wait, have you asked him/her why?

There is no one-size-fits-all answer as to whether or not to go to transplant, or how quickly to go. It all depends on your circumstances and what other options are available. Generally younger patients are pushed in that direction more often, but as you age the risks go up, particularly once you pass 40. Nowadays doctors will sometimes transplant for patients into their 60s, and maybe even higher if they have a very good match and their overall health is otherwise good, but that must be evaluated by an experienced transplant doctor.

If it seems as though a transplant is inevitable then your sister is right, the sooner the better. The more transfusions you have and the longer you wait, the more possibility there is of complications arising. On the other hand, if there's a chance for a normal life without one, or if you have a less than perfect match, or if the risks because of your age or condition seem high, then it makes sense to avoid it as long as possible. Your freight train analogy seems right on target to me, this will have a huge impact on every aspect of your life!

Also, is there a reason you prefer to be treated in your own hospital rather than your sister's? The more experience your transplant team has the better. It is a complicated business and many people travel halfway around the world to go to where they have the best track record. If you have a Center of Excellence in Toronto, then I'd go there first.

[Mary D.]

Dear Mark,
You may have already gone throught the BMT, but I wanted to share with you that my Brother had his BMT over 9 years ago. He had MDS also. I was his donor & we matched 5 out of 5 HLA. While I would never say it was easy & his recovery was perfect, I will let you know that after 6 weeks he made small but steedy improvements. He never got graft vs host disease & returned to the full demands of his job in approx. 6 months. Yes, get the best possible care from the most experience center that is available to you. Good luck to you & Thank God for your sister. She loves you very much.
Mary

[MarkBuchanan]

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