Vacation is Over: My Experience Going Off Treatment
Last updated: August 2022
In a previous article, I discussed how my chronic myeloid leukemia specialist decided I should stop treatment temporarily. Late last year, my feet became swollen, discolored, and cold for some reason, and he wanted to see if my tyrosine kinase inhibitor (TKI) was causing a vascular issue.
Fast forward to two months later and the news is not pretty.
I've been on a treatment vacation
Sometimes, people with my type of leukemia (CML) are given “vacations,” if they have maintained an “undetected,” status for a long period of time. I was given such a vacation. The purpose was so that I could take tests and try to figure out what was going on with my feet.
The plan was to give me a break to see if my particular TKI had side effects that impacted my vascular system. And hey, if all went well, I could have a break from treatment for the first time in almost eight years.
A grave warning
But as I recalled, when I said, “Yay, I’ve always wanted a vacation!” about the step, my doctor looked unusually grave and replied, “No, you don’t, Susan.”
That got me thinking.
Instead of going for bloodwork every three months, I was put on a monthly schedule. Month one went well. I was able to maintain good numbers and my “undetected/negative” status for chronic myeloid leukemia (CML).
The test is called BCR/ABL which is the name of the abnormal chromosome that forms when numbers 9 and 22 attach themselves to each other.
No answers and discolored feet
Anyway, I was on to month two. Meanwhile, the pulses in my veins were pumping adequately, Raynaud’s syndrome and other things were ruled out and I continued living life with no answers and discolored feet.
Monthly bloodwork came back positive
But, then came the bloodwork back, the dreaded “positive,” showing up on the BCR/ABL results, the test showing x amount of leukemia in my system. I just read the results online when the phone rang. It was my doctor saying to get back on my oral treatment with the TKI, immediately.
He also said he had been hoping I’d be able to stay off it, take a break, for much longer.
Oh well, back to the drawing board.
Embarking on another CML voyage
Unfortunately, as I continued bloodwork once per month, I experienced two more “positive,” results, meaning the leukemia is being stubborn and will not go back into hiding. I’m having flashbacks of 2014, when this CML voyage began.
That first year and a half, when I was on a different TKI, the level of leukemia was pretty much where it is at now and for quite a bit of time. For all the progress I've made over the years, I feel like I've been zapped back to start.
First the tortoise, then the hare
Back then, my CML specialist told me some patients have a journey like the tortoise and the hare. I was the tortoise—slow to move, slow to show great success with my treatment.
I was subsequently changed to my current TKI and after a relatively short time, I transformed into the hare. I mostly demonstrated improvement or at least stayed stable.
Being “undetectable,” does not mean life is hunky dory. It’s not. Over time, I had to accept that life was not going to go back to the way it was pre-leukemia. Side effects are still brutal and it's a constant struggle.
Still, seeing that BCR/ABL rate “undetectable” always gave me a boost…but only for three months until the next batch of bloodwork.
That’s how I roll. Remember it's fleeting...There's always that next test on the horizon.
Back at the start
I’m especially disappointed by this turn of events for two reasons: obviously, I’d rather not have leukemia flooding back; and the so-called vacation ultimately did not provide answers and was basically useless.
My feet are still red/purple and swollen. Doctors don’t know why although I’ve heard theories but no solutions. And because I took that risk in deviating from treatment (had no choice), I’m back in 2014 mode again as far as the numbers go.
Fingers crossed, this next batch of bloodwork next week shows that I’ve bounced back and the TKI is working again. If not, I suppose I’ll have to change my course of action once again. Fingers crossed.
Do you get anxious while waiting for blood test results?
What blood cancer were you diagnosed with?