It’s been several months since I wrote about my diagnosis. I figured it’s about time to cook up a public update. So, please join me for a tour of Acute Promyelocytic Leukemia!
What was it supposed to do before we broke it?
The human body is made up of various substances which can be classified into goos and non-goos. Blood is one of the most beloved of the goos. It scoots around the body doing various chores, delivering packages, cleaning up trash, and generally keeping the place in order. Blood can be further divided into three sub-goos:
- Red Blood Cells - USPS for oxygen
- White Blood Cells - Spies and assassains
- Platelets - Occassionally useful gunk
All of these are born and raised in the bone marrow. Bone marrow sits at a spongy midpoint of the goo/non-goo spectrum. It has found a convenient hiding place within the bones (those stalwarts of non-goo). It stays busy by breeding hemocytoblasts (impressionable youth) and putting them through various training programs to fill all of the necessary roles in the blood club.
What did we break?
The name of the disease tells most of the story if you break it down:
- Acute - Speedy
- Promyelocytic - Having to do with promyelocytes (white blood cell teenagers)
- Leukemia - Wow ok there are way too many of these things
Cue the ukelele, as this is a classic case of arrested development. You start young blasts on a path to successful careers as white blood cells and they lose their way as adolescent promyelocytes. They’ve failed to become members of functioning society. All they can really do is procreate, which they do, a lot. The marrow starts to fill up with these useless teens, and the whole blood creation system grinds to a halt.
This is how we caught my APL. The routine blood work from my annual physical came back with a note that said “Excuse me sir, but your blood is missing some blood. Please check into the ER immediately.” This was followed by a few days on a general hospital floor as the doctors marveled at how I could be feeling totally fine with my blood counts so low-my very own episode of House. A bone marrow biopsy showed the promyelocyte party indicative of APL and I was transfered to the hem/onc unit so my treatment journey could begin.
How do we fix it?
I’m going to tell you the treatment for APL and it’s going to sound like a joke but it’s not a joke. Ready?
There’s a whole big story of how we stumbled on this unlikely combo of drugs. I’m still researching the details so I’m saving that saga for a future post. For now let’s cover the basics:
- It’s a non-standard regimen that’s specifically used for APL.
- It’s technically not even classified as chemotherapy, since its central mechanism of action is to trigger cell differentiation (“grow up you deadbeat cell kids!”) rather than just being broadly cytotoxic (“death to all cells who dare to challenge me!”).
- Broadly speaking these drugs are well tolerated. This means that I get to sidestep many of the “classic” chemotherapy side effects like hair loss. The main side effects I’ve had to battle are headaches and dry skin from the pills and fatigue from the arsenic. Sure, it’s no walk in the park, but it’s not all that bad a deal for curing leukemia!
When will it be fixed?
While the drugs are manageable, the treatment schedule is somewhat intense. Cancer treatment is divided into three phases:
- Induction aka “Get out!” - This is an initial whallop of treatment intended to induce remission. This is done in the hospital. It’s a 4 week course, which took 5 weeks for me because my liver threw a hissy fit that caused us to have to back off for a minute.
- Consolidation aka “Aaaand stay out!” - This is continuing outpatient treatment that is intended to stomp out the last traces of the disease and to prevent recurrence. It’s an on/off schedule over the course of 8 months. I’m in the middle of this right now.
- Maintenance aka “And don’t you ever come back!” - For APL patients who don’t present independent risk factors, there’s no specific maintenance therapy. So if all goes well there will be a point next year where I am no longer taking any specific drugs for this. From there it will just be a lifetime of checkups and general vigilance. For such a serious disease, this is a pretty amazing outcome. Go go medical science.
When you’re on arsenic, which is half of the time during consolidation, you’re going down to the cancer clinic five days a week. It’s like a job! And indeed that’s how my doctors framed it for me when trying to help me understand how much other stuff I should be expecting to fit in - “receiving your treatment is your full time job; anything else you can get done is great, but treatment has to be your first priority.”
Consolidation is 4 cycles of 8 weeks so 32 weeks / ~8 months. I’m currently nearing the midpoint. It’s a long road, but every day is progress.