The Devil in What You Know: Changing Treatment
Last updated: September 2021
How do I feel about switching treatment? Luckily, that situation is not on the table at the moment. But, it has been. For nearly seven years, my chronic myeloid leukemia (CML) has been treated with an oral medication called tyrosine kinase inhibitors (TKIs).
When I was first diagnosed (pre-bone marrow biopsy to make it official), the oncologist told me I would take Gleevec for six months and my bloodwork would go back to normal.
In my head, I envisioned this “finite” sort of treatment plan.
I was told I was a "lifer"
Once I got my biopsy results and a different doctor, a CML specialist, I was basically told I was a “lifer,” and CML has no cure, no remission, only a “response.”
The option to go treatment-free was not brought up at that point. It was kind of a far-out, pie-in-the-sky dream to be visited later. (Years later, I was told I’m not a candidate for TFR… a story for another day. My case is complex and riddled with side problems).
Gleevec did its job—oh so slowly—and then there was a plateau… that lingered on and on. The doctor began pushing a second-generation drug called Sprycel as an alternative. At first, I hated the idea. I was “used to” Gleevec, as much as anyone can grow accustomed to swallowing toxic poison.
But when I started having severe stomach problems, numbness in my feet, angioedema, difficulty walking, etc., my doctor brought up the alternative drug as an option. It had been 18 months and my numbers were standing still and not reaching the desired milestones.
So, I switched
Within a few months, I became “undetectable,” which in CML-speak is the best-case scenario. That was the positive. The negative was the fatigue, bone pain, brain fog, vision problems, and constant skin issues the second-generation drug brought with it. But what could I do? My hematologist/oncologist suggested changing to a third option but I refused.
As annoying as the side effects are, I at least know what to expect after five years on this drug. Do you know the saying, “the devil in what you know?” That about sums up my feelings. I’m afraid to start over. I’m afraid to enter new territory again. What if it is even worse? So far, I’ve been in a position where I haven’t had to switch. But that day may come.
Coping with side effects versus switching treatment
There have been times when I’ve lost my response, indicating the med is not working. Sometimes, my numbers start heading in the wrong direction. During these times, the doctor says to look for “blips” versus “trends.” Trends are what you have to worry about.
I’m lucky that my numbers have rebounded after going south and I can breathe easier for three months until the next BCR/ABL test comes along. And so it goes.
Have you ever had to change your course of treatment? Does it make you nervous? Would you rather cope with side effects that you know or make a change and potentially get new or worsening ones?
Let me know.
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