Did you notice I popped the R word into the last blog post? Perhaps it would have been more accurate for me to write “complete molecular response”. What is this, you ask (or maybe you don’t, but since I think it’s kind of interesting I’m going to tell you anyway)?
As I explain, please understand as I dumb this math down for myself. Math isn’t my strong point. Did I ever tell you my high-school math teacher, after tutoring me for months, suggested I drop the course before the exam to spare me an F on my graduating report card? Thank you, Mr. Fox.
The very smart hematologist who suspected I had CML took a bone-marrow biopsy, both to confirm her diagnosis, to stage the illness, and to get a baseline count of how many mutated cells I had. She determined, from this information, that I was in the chronic phase of the disorder, which is the first of three stages. Forget the F in math; thanks to this doctor, I received an A in CML. Now, every three to six months, I undergo genetic testing of my blood (commonly known as a PCR in CML circles) to determine how many cells with my special Philadelphia chromosome are coursing through my blood.
Within 12 months of treatment, I had attained a 4-log reduction (apologies to any mathematicians if I’ve written this incorrectly) in these cells, which means I had 1/10,000 of the leukemia cells I’d had upon diagnosis. Most CML patients who are diligent about taking their special Philadelphia-busting medications fall within this range or even lower within the first year of treatment. I am nothing if not diligent. I imagine you would be too if a doctor told you that carelessness could result in your leukemia progressing and potentially killing you.
So here’s the $128,000 question (inflation and all): If CML patients are in remission, a.k.a., at the stage of major molecular response, what would happen if we stopped taking the medication we were initially told we’d have to remain on for the rest of our lives? Sounds like an interesting research question, doesn’t it?
Normally I’m first in line to try something new. Hot new restaurant in town? I may not eat there, but I’ll know all about it. Hot new clothing store? I’ll tell you where it is. Hot new park in town? Let’s check it out, Jelly.
How about a hot new study for CML patients who want to rid themselves of the nasty side effects of their medications and are willing to stop taking the drugs altogether just to see what happens? No thanks. I’ll pass.
I’ve been a guinea pig for physicians in training over the last 17 years now. I can’t tell you (and not simply because I’m terrible at math) how many hands have palpated my ginormous spleen. That being said, I’m perfectly happy with my major molecular response, thanks; some other brave CML patients can step up to this plate and ditch their drugs in my stead. Once you docs are sure my leukemia won’t return or even progress to a more dangerous stage without my medication, maybe then I’ll consider going drug free. Good luck finding subjects!