AML Hospitalization News/Journal, Part 5

Well, it’s gotten less boring, anyway. I’ve had some unpleasant side effects, some due diligence diagnostics, and some real data has to how effective the treatments have been so far.

One evening, I started experiencing gut pain. It was pretty bad, a little like my old diverticulitis episodes. But it was not accompanied by a fever or constipation, and it felt different from diverticulitis, so I was confident that it was not that. But what was it? Since the pain was pretty intense, I thought they’d give me strong drugs like Dilaudid or something. But no, just a high dose of Tylenol. Surprisingly, it worked. Within half an hour, I could sleep. I woke the next morning to greatly reduced pain, which continued to reduce until it hit zero a couple of days later. It turns out that lesions in the GI tract are a fairly common side effect of the treatment. Apparently, I had one and it healed quickly.

Side note: while the pain was reducing, there was a period where it would flare up when I stood up. Reflexively, I started to walk all hunched up, like I used to do when I was a college actor playing old old old men. I quickly learned that if I gave into it and kept up the hunched over posture, the pain persisted. If I forced myself to stand up straight, the pain went away quickly. There’s a lesson in that…

My next side effect adventure was a fever. Initially it showed up in my regular vital signs check. 100.4°F. Not much of a fever actually, but in my condition, it set off all sorts of alarm bells. They took several gallons of my blood from various locations to culture to see if there was an infection. Plus, I did a pee sample for analysis. I got a chest x-ray. I got a CT scan. All in a quest to find some infection which might have caused the fever. The fever screwed up a night’s sleep with a sweaty phase and a nasty cold shivery phase, but it cleared up by morning, leaving me groggy and energyless, but able to regulate my own body temperature.

Unsurprisingly, the cultures turned out negative. Fevers without obvious causes are a common side effect of the treatment, but they go away. Still, since I have essentially no immune system at present, the doctors have to investigate the possibility that any fever is caused by an infection.

On Monday, I had a bone marrow biopsy (let’s call it BMB) to evaluate the effectiveness of the treatment. The key data point is the blast cells. If the BMB reveals them to be less than 5%, I can skip a “re-induction” phase, where I get another pair of doses of Vyxeos, the serious chemo drug…. and go home sooner.

For reference, the blasts were at 60% before treatment began.

On Wednesday, I got preliminary results from the BMB. The blasts were at 10% by that tally. Good news and bad news. The good news is that the treatment is fundamentally working. The bad news is that re-induction seemed inevitable, and along with it another two or three weeks of incarceration.

On Thursday, the final results came in. The blasts were actually at 6%. Still too high to skip re-induction, but dang, that’s a big margin of error for the preliminary results.

Today, Friday, one of the doctors came by on his regular rounds with news. Since 6% is close to 5%, and Vyxeos remains active for a long time (remember how the serious drugs are enclosed in tiny lipid bubbles?), we’re gonna re-do the BMB on Monday and see if the decline has continued. I may get to skip re-induction after all.

Once again, thanks for all the well-wishes, cards, gifts, etc. I haven’t managed to thank everyone individually in my mushy-brained state.

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