First, some bad news: the results from last week's biopsy are in and they show an *increase* in blasts in the bone marrow, not a decrease like we were hoping. Darn. When I was first diagnosed they were at 10% which meant I had a specific type of MDS called "Refractory Anemia with Excess Blasts", or RAEB. Now the blasts may be as high as 34%, or 13%, depending on how they're counted. Why such a discrepancy, you ask? Well, apparently my marrow is producing a lot of defective red blood cells which confuses the computer, which is the culprit behind the higher 34% value (stupid computer). When a human counted it, they only saw 13%. But either way, this means the disease is progressing towards full-blown leukemia, or specifically, Acute Myeloid Leukemia (AML).
This wasn't entirely unexpected since most people with severe MDS end up with AML if left untreated for 2-3 years, but I was beginning to get comfortable with the whole MDS thing and felt like I had a pretty good grip on it. Now it feels like a whole new ball game. Am I going to have to start all over researching AML? No. The diseases have a lot in common and a lot of what I've read applies to AML as well. In fact, it's called AML when there are more than 30% blasts in the marrow and MDS when there are less than that. So it's just a naming convention. And they still don't entirely agree whether 30% is the right threshold to use. A few years ago it was 20%. So if you go by the computer's number (34%), I have AML. If you go by the human-counted number (13%), I have MDS type RAEB. If you're still with me and want to entertain the idea of picking some value in between, say 23%, then I would have MDS type RAEB-t (the t means "in transition" to AML). So who knows what it's called. The downside is that the chance of success with a transplant is smaller as the blast count increases, but we're trying not to think too much about that part right now. Statistics schmatistics.
So the way I look at it, we're just collecting more data points so that the doctors are happy and getting the dial on me more fine-tuned so that we'll have the most information going into the transplant. It doesn't matter to me what they call it, the counts are still behaving the same way, and a transplant still offers the best chance at a full recovery.
But enough of the bad news, the *good* news is that 2 of the 3 donors have responded! Loyal blog readers will know that there are 3 donors who are 6/6 matches (2 in the U.S. and 1 in Europe). The first donor responded last week, but unfortunately wasn't found to be a match after getting more fully typed. But the 2nd donor, the woman from Europe, responded today and is scheduled for a blood draw next week! We should have the results of her typing in a couple of weeks. Keep your fingers crossed! Also, I found out that there are multiple 9/10 matches that we may be able to pick from, not just the 1 like I had previously thought. A 9/10 match essentially means the person only matches 5 of the 6 main antigens, but match all the rest. In most cases a 9/10 match is as good as a 10/10 match, so hopefully we'll hear about a donor soon. Johanna and I lamented to Dr. Goldberg today that the search seemed to be going awfully slow, but he assured us that it was actually going very fast as far as these things go. So we'll just continue to stay busy with other stuff and not worry so much about it.
Oh and check this out, my dad and Johanna wanted "fan club" t-shirts so they could show support for me, and designed these cool t-shirts for us to wear around. They each have our names on them. We just got them in the mail yesterday. Awesome!