relapse question

[abc123]

After many years in the donor registry, I amazingly matched to donate PBSC to someone completely unrelated and unknown to me who has MDS. Everything was set to go--and then I learned that this person had a relapse, and the donation had to be postponed.

What does this mean, exactly? What is the chance that this person will get well enough to have the transplant? I know every case is different, but just wondering if there is a possible good outcome. I cannot imagine how difficult this must be for the recipient, finding a match but not being able go through the procedure.

[Neil Cuadra]

abc123,

Three cheers for you for matching someone and being willing to donate stem cells! Many of us in the registry never get that phone call.

There are a few possibilities about the postponement. Least likely is that the patient suddenly got better, or better enough to not need a transplant at the 11th hour, especially if they told you it was a relapse. More likely is that the patient's condition worsened so that he or she is no longer healthy enough to risk a stem cell transplant. For example, they could have developed an infection that must be brought under control before the transplant can proceed. It could be temporary or you may never be re-scheduled for the procedure and left to wonder if the patient survived.

How long before the transplant day did they call it off? If it's very short (a day or two) then they probably began the transplant preparative regimen, and it's bad news to call it off after that point.

The woman who donated bone marrow for my wife's transplant was later called as a match for another patient (that's pretty rare, I think) but the procedure was canceled and never rescheduled. She never learned more than that. The lack of information can be frustrating but I guess they have to protect privacy so they tell you little beyond what you need to know.

From the patient's perspective, they have to deal with the relapse but have the comfort of knowing there's a stranger out there willing to step up to help them. That must be quite a powerful incentive to fight to get better! I doubt that the doctors changed the overall treatment plans, since there are no "let's give it a quick try" treatments for MDS, only supportive care, transplants, and drug therapies over longer periods of times. So let's hope he or she had only a small setback that can be corrected.

[abc123]

Just wanted to update this post from June. The patient did in fact get over the relapse (which I have been told is usually not the case), and I will be donating stem cells in a few days! It's really amazing. So good things really can happen when you least expect them. It's very exciting.

[Susan L]

I think its amazing and so happy that there are people out there willing to be so selfless to help someone else save there life. Thank you for being one of those people.

[evansmom]

Dear abc123,

I know first hand what having a willing donor give of themselves means. Our unrelated (and now known to us) donor Bryan saved my son's life a little over two years ago and Evan has been cured of his aplastic anemia and has moved on with normal things like growing into a healthy teenager, hanging with friends and playing Halo Reach!

Thank you for joining the registry and not only being willing to donate, but being genuinely happy and excited to do so.

God bless you.