Got My Finger on the Button, Don't Say Nuttin'

Tue Apr 9, 2024 - 4:00p
AML 3.0 treatment - Day 22

Big appointment with Dr. Chai-Ho earlier today. This is going to be a somewhat technical update where we drill into the numbers and their implications on the next couple/few months. This will likely be my only post this week as Heather and Floyd are arriving tomorrow.

Here's the very short summary: certain counts are just starting to recover which is expected. If recovery continues, I shouldn't need any more transfusions this cycle. Cycle 2 might start directly after Cycle 1 (original plan) or we might take a (couple week?) break between cycles depending on the result of next Monday's bone marrow biopsy (BmBx).

Want to know more? Read on...

Today is Day 22 of Cycle 1, so we've just started Week 4. Despite my optimism about the nadir being last week, Dr. Chai-Ho corrected me... it's usually at the *end* of week 3, with counts starting to recover at the beginning of week 4. So it's not a problem at all that my counts didn't come up last week. In fact, I'm right-on (if not ahead-of) schedule. On Aza/Ven, sometimes certain counts can take longer to recover, and unlike traditional induction therapy, they don't give you Neupogen shots to kick-start the white blood cells.

Some key counts we're looking at:

• Hemoglobin
• Platelets
• Absolute neutrophils

Here's what I learned today -- and then we'll go into more about each count.

As a refresher... the plan for this treatment is that I do somewhere between 2 and 6 four-week cycles of this Aza/Ven + Zifto regimen and then we attempt stem-cell marrow transplant #3 (with a new donor). Until today, I was under the impression that these cycles are all back-to-back-to-back -- meaning, day 1 of cycle #2 is day 29. 4 weeks followed by 4 weeks and so on.

Turns out, this isn't necessarily (or even often) the case. Above I said my counts were recovering. Well, some of them are. Here's the data tables for hemoglobin and platelets.

Hemoglobin not climbing, but not falling like it was before. Earlier in the cycle, I needed red blood transfusions every few days just to keep the hemoglobin in the 7.5 range. But I haven't gotten red blood since last Tuesday Apr 2, so it seems to be stabilizing on its own. We'll see for sure on Friday when I have my next labs.

It may sound strange, but I can feel when the hemoglobin (and accompanying red blood cell counts) falling vs recovering. How? When those count are low, I get winded much more easily. It's pretty simple really. The lower the red blood counts, the fewer functioning cells there are to carry oxygen to my brain. So if I walk, my brain wants oxygen and my heart pumps. If most of the cells aren't carrying oxygen, my brain says, "more oxygen, please," my heart says, "OK," pumps more, and I get winded.

Well on Monday I took two decent walks (walk 1 | walk 2) for a total of 4 miles and I felt less winded vs walks on previous days. THAT'S how I know we're rebounding. Almost 10k steps.

While platelets are still extremely low from a "normal range" perspective, they are clearly rebounding and well above the transfusion threshold. A single transfusion won't boost them from 11 to 30, so some of that is me. I'll bet they'll be in the 40-45 range on Friday. So glad to be done with transfusions -- on Saturday they had to prick me 3 times before they found a vein that worked. My arms just can't take it. I have a feeling a PICC Line might be in my future. :| 

OK, let's talk Absolute Neutrophils... because this is where it gets interesting. First, let's look at the data.

So what are we looking at and what does it mean? I'm not a doctor, and I don't play one on TV, but here's what I know. First of all, the base target we want for Neutrophils is 1.0.  Not 0.10... 1.0. Normal range is way above that, but let's not worry about that for now. No transfusions that help with this, so it's all about this count recovering on its own, so...

1. We're not even close (bud)
2. The little variation on the chart doesn't mean much, but if it keeps falling, that's a bit concerning
3. The lower the count, the more I'm at (significant) risk of little infections causing problems -- of course that's why I'm on all kinds of extra meds like Acyclovir, Posaconozole, etc.
4. If this count doesn't come back by the end of next week, we will need to pause between cycles

#4 is the new thing. Early on, I remember asking... "Wait, since I'm taking Venetoclax..." -- an oral chemo -- "... every day, how will the counts come back?" And the answer was something like, "They just kinda do." Unless they don't. So, if the neutrophils don't come back (to what level and by what time? I don't really know) we'll need to pause at day 28 (by one, two, or even three weeks) before starting cycle 2. This isn't good or bad, it just is. And it's apparently more common than not.

Of course that has huge implications on many things. Most importantly, when do I get to go home? If the cycles are continuous, I was looking to get out of here on or about Day 9 of cycle 2 which is around April 24th. If we pause, does that mean I go home a week earlier, only to come back on Day 1 of the new cycle 2 (whenever that is)?

What determines how long the "pause" should be and do we have any flexibility there? Or is it strictly based on Neutrophils, bone marrow biopsy results, etc.? Whatever the pause is, do we do the same pause between subsequent cycles? Apparently, yes on the "pause the same amount between cycles."

In terms of the flexibility, we really don't know. Though Dr. Chai-Ho knows that I really don't want to be down in LA or getting Aza (in LA or SF/Marin) between May 1 and May 5 and she's going to do everything she can to ensure that's possible. You hear that, Dougie?

If we do pause, how will I feel? What does it mean for easing back into to work, going to JazzFest, and everything in-between? I'll probably feel pretty good since I won't be getting any chemo between cycles. Hopefully that'll mean much more full engagement with just about everything.

So... next steps:

• Labs this Friday -- to see what the counts are
• BmBx Monday -- to see what's really going on with the leukemia
• BmBx results probably on Wednesday
• Based on results, decide on pause yay/nay and if yay, duration
• Get the eff out of here

Oh yeah, and in the middle of all this, I'm moving out of the Luskin tomorrow morning. Gotta start packing up stuff -- I gotta-lotta gear. Then, as I mentioned at the top, Heather and Floyd arrive tomorrow (just after noon). Can't wait to see you guys!! I better get this posted and get crackin'. This Phillies game is too depressing.

iwkiaaaa