Getting Our Own Day: September 22, CML Awareness Day
Since I first heard about it, I always thought it was very clever of someone to designate a day for chronic myeloid leukemia (or chronic myelogenous leukemia) on September 22.
You are probably thinking that “clever,” is an odd way for me to classify the date, but hear me out.
I was diagnosed with CML nearly seven years ago and know first-hand how difficult it can be to explain the disease to other people.
What is chronic myeloid leukemia?
CML was the first cancer to be linked to a genetic abnormality, a chromosomal 'translocation' known as the Philadelphia chromosome. It is so named because it was discovered by two scientists hailing from that city back in 1960. What the heck is a translocation, you are probably asking. Simply put, it’s when pieces of two chromosomes (the 9th and 22nd) switch places. The resulting oncogene is called BCR-ABL. Those alphabet letters are something I write and talk about frequently. After all this time, they flow from the tongue.
In non-scientific terms, the most 'major' blood test I have taken every time I go for blood work (either once per month or every three months depending on the numbers) is referred to as BCR-ABL.
My doctor once described it to me as "how much leukemia you have." That about says it all. Your oncologist/hematologist likely set milestones they look for after certain amounts of time, related to these numbers.
Most CML patients are treated with oral drugs called tyrosine kinase inhibitors (TKIs), more letters I’m frequently spouting. The first one of these I tried had adverse effects that I couldn’t live with, as well as sub-par stalling results — numbers that would not improve or move at any significant rate to show “less leukemia.”
At one frustrating point, my CML specialist likened the plateau to the story of “The Tortoise and the Hare,” noting that I was moving slowly (i.e. the tortoise) toward the goal line of where I needed to be. After a bit over a year, I agreed to switch to a second, stronger TKI to see if there would be better results. Lo and behold, within a few months, my numbers improved.
The side effects are still brutal but you have to weigh those against whether or not the drug is doing its job and keeping the leukemia at bay or at least, somewhat under control. And, you have to adapt and accept the fact that you are not going to feel the way you did pre-blood cancer. At this writing, my BCR-ABL numbers are at a good level but it’s important to keep up appointments and keep an eye on things. Fluctuations and spikes can occur even when you adhere to your dosing schedule. It’s a process.
Phases, not stages
As noted by the American Cancer Society, most cancers are given a stage based on the tumor size and extent of cancer spread. Stages are used in making treatment decisions and predicting prognosis. I can hear Arnold Schwarzenegger saying it now: “It is not a tumor.”
CML is in your blood and blood marrow and classified into three phases based on the number of immature white blood cells (blasts) located there. The phases are chronic, accelerated, and blast (also called blast crisis or acute). There is a lot of good detailed information on this site and others if you want to learn more about CML.
Back to being clever. September 22 is derived from 9/22, the pesky abnormal chromosomes that got us into this mess in the first place. As one of the rarer blood cancers that seldom gets “attention,” it’s noteworthy that this day is set aside to build awareness. Cheers to that.
Did you ask yourself "why me?" when you were first diagnosed with blood cancer?