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Can CLL Mutations Change Over Time?

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Published on January 10, 2020

Key Takeaways

  • CLL has the ability to change over time, seemingly at a faster rate than some other cancers.
  • Some patients don’t have all testing done at diagnosis, because it might change by the time of treatment.
  • Some patients do have all testing done at diagnosis and again when it’s time for treatment.

Chronic lymphocytic leukemia patient Andrew Schorr talks with expert Dr. Justin Taylor from Memorial Sloan Kettering Cancer Center about genetic mutations in CLL, the potential of acquiring new mutations over time and reasons why patients may or may not have genomic testing at diagnosis. Watch now to find out more from a CLL expert.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support. These organizations have no editorial control.

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Transcript | Can CLL Mutations Change Over Time?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:          

CLL can change over time. So, we mentioned the 17p deletion, or people hear this other alphabet soup, 13q, and all these different things, or trisomy, and all these things. So, the way you start out, is that the way you may be years down the road? And if not, how come?

Dr. Taylor:                  

Yeah. For some reason, CLL can change. A term you might read about is it’s called clonal evolution. It sounds like Star Wars with the clones, but you can basically have the CLL that you started with, it can acquire other mutations, or other abnormalities that you’ve listed there over time, so, even untreated CLL, does change over time. We don't really understand fully why that is. We know, in general, cancers do that, so CLL seems to be at the faster rate of that ability to change the genetics.

And so, I think the CLL you end up with might not be the same as you started with. And so, this comes to another question that was asked of when to do this testing for 17p IgHV. You often hear the argument that you don’t need those until you’re gonna start treatment because if you get them at diagnosis, and then you’re gonna not start treatment right away, they may change over time, and you wanna reevaluate those at the time of treatment.

So, that is why some patients might not have all the testing done at the time of diagnosis. Not every doctor feels that way, so some patients do get all the tests run at diagnosis, and then again when it’s time for treatment based on the progression of the disease and symptoms. Then often we repeat those just because there’s the possibility that within that time frame, whether it’s a year or several years, that these markers can change.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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