I’ve had CML 11 years, have been on Imatinib, and have been largely undetectable for most of the time I’ve had it. Last November I developed a mutation (confirmed in a lab test) and my BCR/ABL1 increased from .003 to 3.0% I have a doctor appointment this week to determine what to do (which drug to switch to). In the meantime I am concerned that the CML is thickening my blood with immature white blood cells increasing my risk of stroke. I had a COVID induced stroke 5 years ago that I still suffer side effects from. My question is whether or not my concern is valid. I’m awaiting the latest results on my BCR/ABL1 test, but being I was at 3.0% a month and a half ago, with my drug not working well. I’m concerned that it’s gone up significantly. Thank you.
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What is the mutation type? Some common types include T315I (ponatinib), E255K (multi drug approach), F359V (Flumatinib), M351T (ponatinib)… this is what I found with a simple search on the web. If you know the type, you have a better idea of where you need to go with your therapy. It may be as simple as switching to another TKI that specializes in a particular mutation.
A few members on this site have had to deal with a mutation in the past year. If you do a search on the threads in this forum you may be able to get to those posts and glean some useful info. Maybe it would just be easier to wait until your visit with your doctor to find out more.
Try to keep us in the loop as we all learn from eachother.
Good luck.
JP