Consulation with MDS specialists

Sorry for the late update – I know I promised to send an update after today’s consultation with the doctors from the SCCA, but I was a little slow finally getting to the computer. Not because I feel like crap, but because a house full of friends and family is hard to get anything meaningful done :)

The consultation today went well (technically we’re meeting with doctors from the Seattle Cancer Care Alliance, not the Hutch directly, but the SCCA is made up of physicians from the Fred Hutch research center, UW, and Children’s Hospital). The MDS specialists are very experienced, and the ones we talked to are in many cases the authors of the same papers and research my other doctors have been referring to. We also did the blood work for my sister and parents to start the HLA typing process, but we won’t know whether my sister or parents are a match for a week or so.

Either way, we came up with two possible timelines:

1. My sister (or parents) are a match, in which case we proceed with the transplant right away. “Right away” actually means 1-2 months according to the transplant physicians. There will likely be some preparation leading up to the transplant including chemotherapy or irradiation, but I don’t know how many days/weeks are needed for this.
2. My sister (or parents) aren’t a match, in which case we look for a donor in the national marrow registry and proceed with the transplant after one is found. The process for this typically takes 4-6 months. Some treatments in the interim including chemotherapy drugs (e.g. Azacytidine) might be used to keep the MDS at bay. But it’s possible we could take an entirely “do-nothing” approach until the transplant happens, even if it takes 6 months, depending on how things go.

The good news is that the MDS specialists aren’t in any particular hurry to do the transplant. They all agree that the transplant should happen, but that the amount of time in months isn’t going to make a difference. This is actually a little bit of a relief to us, since the impression my oncologist has been giving is that if my counts (particularly the platelet counts) drop below a certain level, bad things will happen. So he’s been checking my counts every other day and obviously we’ve been hugely anxious and nervous each time about the results. However, the MDS specialists shed a lot more light on the issue and basically said it’s more complicated than that. In fact, the thresholds have changed many times over the past few decades, and most of the data for this are for 60-70+ year old patients, so it’s hard to project the research data for all this stuff on a 34-year old. They agree the counts are low, but unless I have a random stroke out of the blue or some other really serious injury, it’s not an immediate concern.

So whether we do the transplant in a month or 6 months doesn’t concern the doctors as much as ensuring the transplant has as much chance as possible to succeed. For example, doing treatments in the interim may improve my blood counts which has been hypothesized to aid in the success of a transplant. But again, it’s not that simple since there is no real proof of this and there are lots of differing opinions.

Finally, the doctor recommended potential donors simply sign up with the national marrow registry since we are not time-constrained on the transplant. I need to see if the National Marrow Donor Program (http://www.marrow.org/) is the right registry to sign up with. I’ll try and call them tomorrow. From what I understand, it’s not cost-effective to do a private typing for anyone but a sibling or parents since there is a strong chance I’ll perfectly match one of the 6 million people in the registry. So people should understand that if they sign up with the program, there is a tiny chance (approx 1 in 20,000) that they will match my HLA type, but they shouldn’t expect it, and that they’re really committing to a larger purpose of being a marrow donor and potentially making another patient in my situation very happy.

That’s all for today. My parents and sister got to sit in at today’s consultation, and we are all in relatively high spirits since there’s a lot of really good understanding going on at this point and because the situation doesn’t seem quite as dire as we previously thought. I have a couple more appointments in the next few days, but things should return slightly more to normal at least for a couple of weeks after that.

steve