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What Are the Risks of Waiting to Start CLL Treatment?

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Published on April 15, 2019

Patient Power founder and chronic lymphocytic leukemia (CLL) patient Andrew Schorr asks, “Is there a price to pay for watch and wait?” Will the disease proliferate over time? A CLL expert panel including Dr. Philip Thompson and Dr. Jackie Broadway-Duren, both from The University of Texas MD Anderson Cancer Center, weigh the pros and cons of waiting to start treatment. Watch now to learn more.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences and TG Therapeutics.

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Transcript | What Are the Risks of Waiting to Start CLL Treatment?

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.

Now, if we look at subgroups of patients who may be potentially even cured by treatments like FCR, then you can make an argument that if, well, if we know we're going to need to treat you then maybe we should do it a little bit earlier before you get really sick, and perhaps if there's less of a disease when we treat you we could do better.  We don't actually have data that tells us that that's the right approach.  So really there are a number of clinical trials that are being done looking at earlier therapy with a number of drugs that are, I guess, less toxic than FCR.  So it will be interesting to see how those play out, I think.  But it is a very good question. 

One thing I do with patients is that not all watch-and-wait patients are the same.  So some watch-and-wait patients might have a white count that's just above normal, they don't have any lymph nodes.  When we do the genetic profile of their CLL it looks like what we call favorable genetic profile. 

And then on the other hand you may have some patients who are in watch and wait where every six months or every 12 months their white count doubles, they have lymph nodes that are growing, and so even though they may not meet formal treatment criteria you can clearly see they are progressing and they may be progressing relatively quickly.  And in that setting sometimes we don't wait quite until they meet those formal treatment criteria.  We may say, well, that's where the art comes in.  We say, we know you're going to need treatment in six or 12 months, why don't we just get started now.  But you don't want to do that in a patient who could go 10 years without needing therapy, if that makes sense. 

But on subsequent visits when the patients come in we do a very thorough physical exam on them to check lymph nodes to see if there's been any advance in the size of the nodes or the liver or spleen, and we again review the labs very closely when the change is in the absolute lymphocyte count or hemoglobin and platelets.  Those are indicators that would indicate to us whether the patient is progressing.

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.