MDS Becomes AML - Transplant News Good & Not-So-Good

The meeting with Dr. T went well. There's some good news and not-so-good news.

Not-so-good: my brother is not a bone marrow match.

This, of course, means that a search of the international bone marrow donors registry must be made to find a match. The good news there is that a preliminary computer scan of the registry came up with 50 possible matches.

These aren't confirmed matches, but strong possibilities. Possible matches are made using six markers that are found in initial blood tests. In 50 cases there were six out six matches to those markers.

To be a confirmed match, further "typing" blood testing must be done on both me and potential donors, using ten markers to define an actual match. The doctor looks for at least nine out of ten, but prefers ten out of ten. When a donor with that high percentage of matching markers is identified, we can move forward with the transplant.

Fifty, we were told, is a pretty good preliminary result. Sometimes the prelim scan yields only a few. So, there's reason for hope there.

Being conservative in all her projections, Dr. T said it would be two to four months to confirm a match. Obviously we're rooting for the shorter period.

The entire experience at the Transplant Center proved reassuring. Bone marrow transplants are what these guys do. They are well organized and have the whole thing down to as much of a routine as is possible. What's involved in the transplant itself—exactly what chemo drugs to use, whether or not to do radiation, etc.—depends on a whole bunch of variables (both in me and with the donor) that can't be decided until all the pre-transplant test results are in and an overall assessment of how to proceed can be made.

The transplant hospitalization lasts a month. It's followed by two follow-up visits to Dr. T per week for a month, and then once per week until 100 days have passed. Immuno-suppressant drugs must be taken for about a year.

To Consolidate or Not to Consolidate

So, the next question is whether Dr. O wants to do a consolidation chemo treatment or two between now and the time a donor is found. I'll consult with her on that later in the week, but my guess is that she'll want to do that.

Consolidation chemo is done in-hospital, lasts for about five days and isn't as intense as the initial chemo treatment I had last month.

Not that it's anything I want to do, but nobody's asking me.

Can I Be Tested to Be a Donor?

Any number of friends, colleagues and extended family have volunteered to be tested as potential donors. I'm flattered and humbled to know that there are so many folks who are so ready to help.

I asked Dr. T about friends and relatives being tested and she said what I thought she would: the testing is expensive and the chances of being a match are tiny; it's not worth it. If you really want to donate, it's best to make yourself available to all potential recipients by volunteering for the registry.

But, volunteering for the registry (for which you must be under age 60) is not about donating to me. It's about potentially donating to anyone in need. For me, or for any patient in need of a donor, the registry, which contains millions of volunteers around the world, is the only logical way to go.

So, there we have it. If we're lucky, we might be through this process in four or five months. If we're not so lucky, it may be seven or eight months.

Either way, if you want to find me next winter, you'll have to look for me on the slopes. There's a lot of missed ski runs to make up for. And I intend to go for it.