[ Inglés] When Should CLL Be Treated? An Expert Explains the Signs and Symptoms

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Topics include: Treatments and Understanding

For chronic lymphocytic leukemia (CLL) patients on watch and wait, what signs suggest that treatment is necessary? Noted expert Dr. Philip Thompson, from The University of Texas MD Anderson Cancer Center, discusses how the disease is monitored, what factors indicate it’s time to treat and the basis for initiating therapy. Dr. Thompson also explains the reasoning behind the watch-and-wait approach, symptoms of progression and how blood counts influence treatment decisions. Watch now to find out more.

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Andrew Schorr:

So I had this four-and-a-half year, 1996 into 2000, watch and worry, and at some point Dr. Keating said, hmm, we're observing this and that, not just the white count but the lymph nodes and the spleen and the fatigue, some sweating, people can get night sweats, other symptoms, I think it's time to treat, and I think I have something for you that I'd recommend.  

So let's go through is, am I right?  Those are the kind of triggers for treatment, some of these things?  Carol had spleen.  You said everything had gone awry.  So what does it say?  When is it time to treat?  And then help us understand the discussion about goals of treatment.   

Historically, we didn't have very good treatments, and so the kind of paradigm of watch and wait came from an era when we may not have had treatments that could dramatically affect the disease course, and so there were some big studies done that showed if you treated someone at diagnosis or soon after diagnosis it made no difference to how long they lived compared to if you waited until they developed significant symptoms, and so that's really where that paradigm comes from, is this idea it's not going to make you live longer if I treat you earlier.  And so that's why in terms of the approach to decide when to treat someone it's really based on symptoms.  

So symptoms can be things like exhaustion and severe fatigue.  It can be drenching night sweats.  It can be lymph nodes that are growing and becoming uncomfortable.   

It can be hemoglobin dropping in the blood or the platelet count dropping in the blood to the point where that puts you at risk of, in the case of platelets at the risk of bleeding and in the case of hemoglobin of being severely fatigued.  We look for those things.  The white count is not a useful marker in terms of do we need to treat you or not because if the lymphocytes are circulating around in the blood, they're usually not doing much.  It's when they're packing out the bone marrow and preventing you from making normal blood that may cause some problems—or if they're growing in the lymph nodes and the lymph nodes are getting very big and they're causing problems.  

But some patients may have a white count of 200,000 but completely normal hemoglobin, completely normal platelet count, no lymph nodes and feel absolutely fine.  Now, that patient doesn't need to be treated. Whereas another patient may might have a white count of 20,000 but actually have an enormous spleen that's pressing on his symptom, and he can't eat properly, and he's losing weight, so that patient needs to be treated even though their white count is much lower.  

Where the white count is useful I guess is if it's changing very rapidly over time.  So we look for how quickly it doubles.  We think of a lymphocyte count that doubles in less than 12 months as being fast and particularly it's less than six months. Anything more than 12 months to double is relatively, relatively slow.  So I guess those are the things that we base a decision to treat a patient on is like what are the symptoms, and do those symptoms warrant treatment that will hopefully actually make you feel better.  

People often think, oh, I'm going to go into treatment, the treatment is going to make me sick.  But usually when you've made the decision to treat actually once you get onto treatment you feel a lot better.  And sometimes the symptoms sneak up on you. So people don't quite realize how many symptoms they have from the disease.   

I remember a relatively young woman that I treated who had a white count of 350,000, hemoglobin of 8.5, and she said she felt absolutely fine.  And so we actually watched her for some months, and eventually she decided, oh, look, I think I'll have treatment.  And after we treated her and the white count was back to normal and the hemoglobin came back to normal she said, oh, my God, I can't believe how much better I feel.  

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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Page last updated on September 9, 2019