Thread: Danielle S.
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Old Thu Dec 2, 2010, 01:33 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Danielle,

I hope you and your husband can find some information and support at Marrowforums. This is a place where you can talk to MDS patients who have walked the road before you or are walking it right now.

It's unfortunate that Vidaza didn't continue to work for your husband. It made sense to try other approaches before discussing a possible transplant. Since a transplant is now on the table, you are wise to look for more information about it.

Have they done a donor search yet? Does you husband have siblings who can be tested to see if they are an HLA match?

If you've heard good and bad about transplants you're probably getting accurate information. Transplants can provide a permanent cure for the MDS, and that's what we all want, but they're risky. The odds are best for patients who are youngest, have the lowest IPSS scores, have a well-matched donor, are generally healthy other than the MDS, and have the best medical care. Age 51 is between the youngest and oldest transplant patients. MDS-RAEB1 is between the least-bad and most-bad MDS categories. So he's not the best risk or the worst risk as a transplant candidate.

If your husband's doctor considers a transplant the only choice then learning about the process and getting prepared should be your priorities. BMT InfoNet and the National Marrow Donor Program are good resources. If a transplant is not the only choice, you and the doctor need to be looking at the tradeoffs between choices, and it's a tough and personal decision. In either case, you might want to get a second opinion for further confirmation of what you've been told.

You can learn which treatment centers do the most transplants for MDS here. You can find statistics for the Western Pennsylvania Cancer Institute here. But every patient's individual case has to be evaluated on its own merits and the statistics about everyone else can't tell you your own prognosis. In addition, the statistics you find are based on past cases, and every year improvements are made to the transplant process that bring increasing success.
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