This series started as a news report for concerned friends and relatives in Facebook and through email. Interest in it is greater that I’d anticipated, and I’m having trouble keeping track of who I’ve sent which parts to. So, I’ll move it to the blog where interested folks can check when they want.
March 17, 2023
A few people have asked for updates on my health situation. Instead of typing the short version several times, I’ll do a longer version and copy & paste.
Once the AML diagnosis was in, I could choose to let it go untreated, and die in weeks. I could choose transfusions-only, and die in months. Or, I could choose some form of chemotherapy, and have a fighting chance of getting cured.
Not too tough decisions so far.
I received the diagnosis at UC Davis Med Center in Sacramento. There, my initial choices were either the “standard of care” high intensity chemotherapy, or I could participate in a clinical study where half the participants receive the standard treatment, and half get a low intensity treatment which hypothetically has similar outcomes but is less awful. It also lasts longer. So, more concentrated 3-weeks of misery versus 6-weeks of still-pretty-yucky.
A decision was needed soon, but not instantaneously. And I had an appointment with our local oncologist the next day. The local doc said that they can do the low intensity therapy on the coast and outside of the study. Furthermore, I could do it as an outpatient instead of being cooped up in the hospital. Sounded good. But then I went through their educational meeting about what I’d be going through, and suddenly being an outpatient at a podunk hospital didn’t seem so great.
I’d have my already-compromised immune system wiped clean. The house would have to be super-clean. Our cabin is… not super clean. I’d have to watch my diet carefully. I’d be sick enough that I wouldn’t want to cook, and Andi doesn’t need the burden. Other logistical problems too numerous to list. And what if I take a turn for the worse and have to go to a big hospital anyway?
So, I wound up back at Davis. My doc here is one of the top researchers in the field*, so I’ll get a custom-tweaking of the standard therapy, tailored to my particular variety of AML. I’ve been in the hospital for a couple of days now, getting an EKG, a kidney ultrasound, another bone marrow biopsy, a cardiac ultrasound, a chest x-ray, a whole shit-ton of blood work, and a few other tests I’ve forgotten about.
Chemo starts tomorrow. Finally(?)
While the next few weeks will not be fun, the long-term prognosis is decent to good.
*for those interested in such things, my doc is Brian Jonas. When one searches for him on PubMed, one gets this:
March 24, 2023
It’s time for Chapter Two of the exciting saga, “Garth Gets AML”.
If you missed the first chapter, here’s the micro-version: I’m in the UC Davis Medical Center in Sacramento receiving treatment for AML, acute myeloid leukemia. I’ve been here for 9 days of a stay which will probably total 4 weeks or maybe a little more.
After a long week of tests, I finally started chemotherapy on the night of Tuesday, March 21. It was something of an anti-climax, actually. I experienced no side effects. From my immediate perspective, it could have been just another bag of saline through the IV.
Wednesday and Thursday day were mostly boring, I felt OK. Just a little bowel disruption—probably from antibiotics—and low energy from the leukemia itself. Thursday night, I received the second chemo dose. Still no icky side effects; I’m feeling extra lazy, but basically OK.
Saturday night, I get one more dose. That’s it for the first round. Then, I’ll switch to an oral medication.
Regarding the specifics of my treatment, I’m in a clinical trial looking at the efficacy of a combination of two chemo drugs. Both are approved by the FDA for different therapies, but the researchers think the combination will work better, and preliminary data supports the hypothesis.I’ve been getting Vyxeos, which has recently become the standard treatment for this form of leukemia. It’s a combination of two tried-and-true chemotherapy drugs wrapped in tiny fat bubbles. The lipid layer helps deliver the drugs to the target cells with less peripheral damage.
The second drug is the oral one I’ll be getting next week. It’s called Glasdegib. Its approved use is for AML in older folks who likely wouldn’t tolerate stronger drugs. Theoretically, the combo will result in better outcomes for more patients starting with me me me.
If all continues to go well, we’ll whip this bad boy into remission in a few weeks. Then, I’ll go home for a while, then return to Davis for one more round of Vyxeos, then—knock on wood—I’d be eligible for a bone marrow transplant, and therein lies the cure.
March 31, 2023
It’s been a few days since I’ve done a hospital news/journal thing, so I guess I’m due.
I’ve got good news and bad news. First, the bad news: this post won’t be terribly interesting, as there’s not much to report. Now, the good news: this post won’t be terribly interesting, as there’s not much to report. Any substantive news at this point would probably be bad, so boring is good.
So far, the treatments have been going as well as could reasonably be hoped. I received the first round of Vyxeos and the first three doses of Glasdegib without serious side effects. My blood work shows that the right counts are dropping, so the drugs seem to be working. The side effects I’ve been feeling are pretty minor: lethargy, a little brain fog, some joint pain, irregular colon activity. The doctors aren’t certain if I’ll lose my hair or not, but so far, not. There’s an ongoing concern about the possibility of infection, so I’m getting antibiotics, anti-virals, and anti-fungals, too.
I’ve still got a lot of time to kill here. I shouldn’t be feeling any or much worse than I do now, but I’ll be stuck here in the hospital. On April 10, I get another bone marrow biopsy to determine if I’m in remission or not. After that, I should be able to go home for a spell before one last round of Vyxeos , and then, eventually, a bone marrow transplant. It’s a long road, but the prognosis is good. If all goes well, I’ll be free and clear and healthy by the end of Summer.
Thanks for all of the expressions of support, everybody. It’s good to hear.