Day +111

Well, it's not GOOD news, but it's not the worst news, and (as usual) once I have a plan, no matter how tentative, I feel better emotionally. 

Blood counts:

WBC: 0.3 (remains so low); HGB 7.3 (dropping); PLT: 56K (woot!)

We knew the news wasn't good by the look on Dr. Atallah's face when he came into the room. Greg immediately pulled his chair closer to me. I think both of us were thinking, "plan for hospice." Luckily we're not there yet.

However, as I had expected, this regimen of chemo is not working on my leukemia. In June, I relapsed with 0.6% blasts in my marrow. Last month they were up to 5.6%, and this month I jumped to 17.1%. Definitely not working.

So the BEST case scenario is a possible clinical trial. I'd mentioned it twice before. It was in early stages back in April when I first fell out of remission pre-transplant. At that point, the trial was Phase One, lower dose. Then, when I fell out of remission post-transplant, it was mentioned to me, but was not currently enrolling. Now the trial is in the ramp-up phase, going from 0.75 ug to 1.0 ug. They FDA has apparently given oral approval, but not yet written approval, which could take a few weeks. Dr. Atallah said that they have seen "very promising results" at the lower dose. He also said that a wait of two weeks might be emotionally concerning, but is not medically concerning.

As a reminder, the clinical trial combines CLAG-M (which is the standard of care for me at this stage) with lintuzimab. CLAG-M is cladribine, cytarabine and filgrastim with mitoxantrone. Lintuzimab is an anti-CD33 antibody with a radioactive portion attached. Some AML cells express CD33, and the lintuzimab seeks them out and destroys them (cool, right?). Last go-around we didn't know if my leukemic cells expressed CD33, but today Dr. Atallah said that they express CD33 "very strongly." This is definitely good. This treatment needs to be done in-patient. If you click on the link above, you'll get specifics, but the treatment itself is 5 days, but then a total of 3-4 weeks (or more) in the hospital because it REALLY knocks down blood counts and a patient is extremely transfusion-dependent and neutropenic, much like my initial 7+3 regimen back in November.

Right now that is my utmost hope: getting into the CLAG-M + lintuzimab clinical trial. I welcome any positive thoughts that way.

Unfortunately I have two other issues that I'm dealing with, which could possibly prohibit me from qualifying for the trial.

Last week I noticed what I initially thought were bug bites on my calves. I've gotten more, but they are strange. They appear bright red, but the center of them is a different texture. And after a few days, the top layer of skin just peels off and leaves me with a slightly-darker skin tone in the shape of the spot. Dr. Atallah is sending me for a skin biopsy. It could be leukemia cutis, which would only tell us that I have leukemia, and we already know that! It could also be a form of graft vs. host disease. Leukemia cutis wouldn't disqualify me from the trial--I'm not sure if treatment for GVHD would or not.

The scarier symptom is that I've been getting shocks down my legs for the last week or so. At first it only happened when I was biking or walking but now it sometimes does it when I'm sitting. This could be a sign that the leukemia has travelled to my spinal fluid. Dr. Atallah quickly reassured me that there were treatments if that were the case, but before I could even ask, he said that it might disqualify me from the clinical trial.

So tomorrow at 7:00 am I have labs, followed by a blood transfusion, and then at 11:00 a lumbar puncture to check for the presence of leukemia in my spinal fluid. I'm not sure how long it'll take to get those results, but I'll let everyone know when I know.

If, for whatever reason, I'm not eligible for the clinical trial, there are still options. Essentially, I'd drop down to "just" CLAG-M. This would still be in-patient for 3-4 weeks.

So there's a lot to unpack. There's a lot of very scary stuff. But I guess my prime take-aways are thus:

1. I appreciate positive thoughts for a clean (negative) lumbar puncture tomorrow

2. I appreciate finger crossings and hopes that I am able to get into the clinical trial 

3. I am thankful that I will get at least a little time at home, without any chemo, in hopes that my blood counts can recover before the next onslaught

As an add-on, I really need to figure out a way to put on weight and get stronger again. This month of chemo and leukemia ickies have made me extremely weak. That's no way to fight this beast or make it through another rough chemo regimen. Feel free to remind me (via text or messenger) to eat something or do some squats or wall pushups!

Thank you. Love you all, and know that I appreciate all the positive vibes you'll be sending my way for this next bout. XOXOXO