Wednesday, September 3, 2008

Some good news and some bad news

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!


obscurity said...

That shirt is too cute!!

So while it does kinda sound like "bad" news - I'm really seeing the name-change as more of semantics than something to dwell too much upon. While their naming conventions may change, the outcome and current conditions remains the same, right?

Is this something that is a result of the chemotherapy? Has the blast count been trending upward, or is this one reading an outlier?

I'm thinking about how cool it is that there are more potential donors. I think that's great news, and once the transplant is done, (apart from the thick, luxuriant hair growth and a newfound allergy to chocolate and garlic) the blast counts this week won't matter all that much, right?

George said...

Ohhh I want a T-Shirt!! How do I get one?

I like you am waiting for this transplant thingy. Hurry up man. I know I know it's like hurry up and wait.

lynda k said...

those shirts are awesome, i love them :) i'm rootin for you on the donor!

V Stevens said...

Mama V wants one!

MW said...

yep, more of the same.... how do we get a T- shirt??? I know a 2nd run must be in the making! right? Anyway your DC drew is focusing on the positive= more potential donors!!!
My mantra is "life is perfect." It helps me, keep in mind that this world unfolds the only way it can, even if we cant understand it. we are where we are, because we have to be there. there are no other options. I don't know it works for me.......use it if you want to! or not! And when the dust has settled, and you look back on this experience, you will see the lessons you gained from it. even though it hard to see the light while in the middle of this. USE IT OR NOT I WANT A SHIRT!!!!!! (this was not meant to get to heavy)
PS I told Sarah I am going to Say "iphone" instead of "I do". She did not find this funny!

Anonymous said...

Hang in there, we're rooting for you!

And if there's another round of T-shirts...let me know ;-)


Anonymous said...

hey steve,
sounds like there are some bumps in the road, but dont get drug down by them just keep on scoot'n down the road.

ps if there is a second run of shirts leslie and i would also like some. later josh & leslie

Cassie Wallender said...

Thanks for the update, Steve; just wanted to let you know I'm also rooting for you.

Nic said...

I'm late to the party, but I wanna shirt too (and one for Rachael)!

Fingers, toes, and anything else I can find to cross in regards to mysterious European lady donor.

Anonymous said...

Steve, what is the difference between a 6/6 and a 10/10?