Almost there

Sorry it's taken a few days to write. I've been waiting to get all the details I could. Also, I felt really awful all weekend without even enough energy to blog. Sunday night I had a fever high enough that I actually called in. It eventually dropped into the normal range, but I had that icky low grade fever thing going on.

Yesterday was a very exhausting day. My appointment wasn't until the afternoon and I was pretty sure I'd need both platelets and red blood cells. By the time we got to Froedtert at 2:00, I was wiped.

My WBC are zero.

My PLT were <5k (eek!  That explains the purple blotches everywhere)

My HGB was 6.7 (and that would explain why I could barely stay awake)

Unfortunately my blasts climbed up to 73%.

So I got a unit of platelets, a unit of red blood cells (they would have given me two, but the Day Hospital wasn't open late enough to get the second unit), and Dr. Atallah doubled my Hydroxyurea dose to try to drop my peripheral blasts.

Dr. Atallah said that the clinical trial looked good, but the team wasn't meeting until Tuesday morning. Tentatively admission would still be on Wednesday with treatment to start depending on when I went in. Luckily, they lifted some of the visitor restrictions this week, so it's back to one visitor being allowed for the duration of the stay on all but the bone marrow transplant unit. As much as I loved all the nurses on 9CFAC, I'd rather get to see Greg! So I'll be on either 7 or 8 CFAC.

I had read up about the previous iterations of the clinical trial and so (or course) I had a bunch more questions.

One of the write-ups of the early results said that they'd seen positive results in both "intermediate and poor risk cytogenetics." I asked Dr. Atallah if any of the "poor risk" patients had the tp53 mutation and he said yes, multiples. That's exciting!

So Greg & I headed down to Day Hospital where I asked if they could speed things up because our new dog was supposed to arrive at 7:30.

Unfortunately, my body didn't cooperate and when they did my pre-blood vitals, my temp was 100.2. They called the blood bank to hold the blood and waited for a return call from Dr. Atallah. When he called, he said they could give me Tylenol and proceed with the transfusions. 

The good thing is that the Tylenol lasted long enough to get me home and Kravitz's arrival was only delayed half an hour. But then I crashed! Luckily Ash did a great job with Kravitz last night.

This morning Travis and I took Kravitz to his first vet visit. (Poor guy has been through so much in the last month.) Kravitz is settling in well. Here's some obligatory cute photos (although the cutest stuff is when he flops down or stretches and yawns).

This afternoon I got a call that I needed a pre-admission COVID test, so I figured that meant I was in the trial. :) Basically I need to be negative for COVID and pass some other screening tests (labs, EKG, echocardiogram) and a bed needs to open up, but I should expect to be admitted sometime tomorrow!

I also got a call from the Clinical Trial nurse who walked through the consent form with me (other than signing it). She apologized for not having a copy for me to read through, but apparently they only finalized it this morning.

So I learned a bit more.

This trial (CLAG-M + lintuzimab) was supposed to have stopped with a dose of 0.75 uCi/kg (earlier trials were 0.25 and 0.50). However, the lintuzimab was so well tolerated that they asked the FDA to try dosing it at 1.0, and if that's safe, at 1.25uCi/kg. And I would be the very first person to get this dose of this combination. (I've always been a guinea pig :)) Other trials have used lintuzimab alone or with other chemo combinations at this dose, so it's not that I'd be the first person to get this high of a dose of the lintuzimab--just in this combination.

If all goes well, I get admitted and do pre-admission tests tomorrow. Thursday they would administer a dose of G-CSF, which is the "G' in CLAG-M. It is an injection that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream, priming me for the chemo. This repeats for five days (and sometimes after the regimen to promote the rebound of counts).

Friday I start Cladribine (CL), which is a two-hour infusion and Cytarabine (A), which is a four-hour infusion, for five days. I also start Mitoxantrone (M), which is a 30 minute infusion for three days.

Then I take a few days off before a big, long day. In preparation for the lintuzimab, I start pushing fluids (drinking and IV) in the morning. Mid-afternoon (probably about 2:30), I will get one 30 minute infusion of the lintuzimab. Because it is radioactive, I will receive it in the nuclear medicine department. A nurse from the blood cancer floor must accompany me, and also watch me for two hours after. 

And then we wait!

The Friday that I receive the lintuzimab (October 2nd) will be our 27th wedding anniversary. I am reading this as a good omen. I am also somewhat excited about being the very first patient to receive this regimen at this dose. And I'm also choosing not to think about things that might come after (non-recovery of counts, etc.). The last few months have been really, really hard. And disheartening. But I think I had to get to this point. Two months ago I would have had a really hard time going back into the hospital again. Feel free to remind me of this when I complain in two weeks, but I am ready to return. I've got this hospitalization thing down! And Greg can visit. I can do this. :)