CML Awareness Day is September 22
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 a weird thing to call a date but if you read until the end, I’ll explain why.
Diagnosed with leukemia eight years ago
I was diagnosed with CML nearly eight years ago. It is a very difficult disease to explain to other people. No matter how much I learn about it, I still don’t know everything.
However, what I do know is that CML is a blood cancer resulting from a genetic abnormality called the Philadelphia chromosome. The abnormal chromosome is created when chromosomes number 9 and 22 have a “translocation,” and kind of `switch’ places. The oncogene that forms is called BCR-ABL.
When I was first diagnosed, my CML specialist explained it by saying the chromosomes – “get married,” or pieces of each latch onto each other. How romantic! (Still hoping for a divorce one day!)
I have spouted the term “BCR-ABL” so much these past eight years that I think those around me have their heads spinning. Why?
The big BCR-ABL test
When I go for bloodwork, the `big’ test I take is called “BCR-ABL,” because it shows how much leukemia is in my system.
The rest of my bloodwork comes back that same day but the results for the BCR-ABL test take longer. It drives me crazy. This last month, for example, it took nearly two weeks to find out what was going on. Other times the results appear after only a few days. Either way, the waiting can be stressful.
Your oncologist/hematologist will likely set milestones on results and tell you when they should be reached. It can be an up and down journey and every patient’s experience is different.
TKIs - weighing effectiveness with side effects
Many CML patients, but not all, are given oral, targeted drugs called tyrosine kinase inhibitors (TKIs) for treatment. These drugs come with a lot of side effects that have to be weighed against if they are able to kill leukemia cells or a better way to put it is “get them under control.”
Another thing I was told is that the cells are not really gone but they can go into hiding and become undetectable which is an important goal. Therefore, there is no cure for CML. There is no remission. The most you can hope for is this undetectable “response.”
My TKI experience: ups and downs
As for me, I was taken off the first TKI after about a year. I was slow to respond and had terrible side effects—to the point that I couldn’t walk any more among other things.
I fared better with the second TKI, even achieving “undetectable,” status at certain points. But if I’ve learned one thing it is that you can’t get complacent or assume things can’t change.
After a brief time off treatment this past winter for another medical reason, the amount of leukemia in my system increased. I’ve been in this situation for several months now and it is discouraging to say the least.
My next BCR-ABL test is tomorrow so we’ll see how it goes. I may need to change to a different drug or best-case scenario, I’ll get better results and continue on.
Bits and pieces
What more is there to know about CML? Well, for starters, the cause of it is unknown. It supposedly isn't heredity.
Another important fact is that CML is located in your blood and bone marrow and is “not a tumor” (cue Arnold Schwarzenegger in “Kindergarten Cop.") CML does not have stages. It does have three “phases,” however. Those are chronic, accelerated, and blast (also called blast crisis or acute).
Okay, if you’ve made it this far—you’ve waited long enough. Drum roll please.
The significance of 9-22 as CML Awareness Day
CML gets its own designated special day on September 22 because…9 and 22 are those abnormal chromosomes that put us in this mess in the first place!
Because CML is a rare blood cancer, it seldom gets attention. I’m thrilled that someone was clever enough to put 9 and 22 together and come up with this special designation day.
So, to all those CMLers out there…Let’s make our voices heard—today of all days and every day.
Have you entered our Blood Cancer Awareness Month giveaway?
Did you have to make diet changes after your blood cancer diagnosis?
Join the conversation