IM Part 2 Almost Complete
During this phase, Alyson’s ANC has been dramatically low. The goal of maintanence/interim maintanence is to keep the ANC below a certain level. For her protocol, it’s 750 for IM. On the 25th, her counts were still below 500 (around 250, actually) and she wasn’t able to get methotrexate. Again. She hasn’t had “chemo drugs” since the 1st – the first day of IM. Now, she has gotten Vincristine. However, it doesn’t “normally” affect counts. She has also gotten PEG shots (twice).
When I expressed my concerns to our team, the replies were more towards the side of making certain she was getting enough chemo to keep things in range. Which she was, obviously. They thought I was worrying about keeping the Leukemia at bay. In reality, I was/am much more worried that her counts haven’t rebounded. What’s going on in that little body? What does that mean for starting up Delayed Intensification again?
In order to start up IM#2, she had to be above 750. In order to start up DI#2, I believe it’s the same. She just hasn’t ever been up high enough again. That one dose knocked her socks off and that’s that. But with DI, you have to keep going irregardless of what your counts are doing. Is she going to be at 750 to start and then get rammed so hard that we’re living at the hospital again. Knock on wood.
At least this time through DI will be a tad different. One of the multitude of tests sent out was an enzyme study. Alyson has some of the enzyme but not at normal levels. Whatever that enzyme is, it is the one that metabolizes the 6TG. Therefore, she reached some serious toxic levels of the stuff. We won’t be using it again. Instead, it will either be dropped completely or 6MP will be substituted. Even so, I believe this next DI is going to be filled with nerves.
Picture from the 2009 AFA Graduation Fly-Over
OUch.. counts. …. It used to be 1000 do you think they lowered it because kids just weren’t hitting it?
Hi Alyson’s family. Thanks for finding us on our caringbridge site. Quinn was delayed almost three weeks for her inital IM. It drove us nuts. We wanted forward progress, not a standstill. I was a nervous wreck wondering when her counts would go up. For DI we were a week delayed. It seems like all the kids are delayed for one stage or another, or all of them. I struggle with the unknown from one week to the next. So I will be wishing good thoughts tonight for Alyson’s counts go up. What eases my mind (only a tiny bit) is thinking that if their counts are horrible the chemo must be working and doing their job, maybe too well. Our family chant and song is …fevers stay down, ANC go up. Good luck in the next week. It is nice to know that we are not all alone in this Leukemia club. Just wish the membership would stop growing.
Go Alyson kick some ANC butt!
Best Wishes,
Quinn’s mama