What Are the Symptoms of CLL and How Does It Progress?

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Topics include: Treatments

At our town meeting at MD Anderson Cancer Center in Houston, Texas, CLL experts Drs. Zeev Estrov, Nicole Lamanna and Michael Keating discussed the various symptoms related to CLL.  The panel follows up the discussion answering the questions, “How does CLL progress, and when should treatment begin?”

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Genentech Inc., Gilead Sciences, Janssen Pharmaceuticals, Inc., Pharmacyclics, Inc. and Teva Pharmaceuticals.

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Andrew Schorr:

Okay.  Dr. Estrov, you mentioned fatigue.  What are some of the other symptoms people usually experience? 

Dr. Estrov:            

So sometimes patients have symptoms that are found also in patients with lymphoma like night sweats, like low-grade fever.  But they are more uncommon.  The most common symptom is fatigue.

I also want to mention, and it will come up later with the therapeutic options, is that the immune system kills out some of the CLL cells until the immune system starts failing.  So now one of the strategies that is coming up now is how to use the immune system to kill leukemia cells.  I'm sure Dr. Keating will elaborate on it later. 

Andrew Schorr:                  

An analogy—some people have heard me do this before—is the bug zapper.

If you grew up in the Northeast like I did, in the summer you're on the porch, it’s evening and it’s zapping the bugs.  That’s your immune system.  And it’s looking for abnormal cells all the time—bad guys.  And your bug zapper let you down.  Whatever the cancer was, the bug zapper let you down.  So some of the latest strategies are how to restore the bug zapper and have it do its job.  And we’ll talk about that when we talk about immunotherapy, having your immune system have this surveillance for abnormal cells.  Could we just go back for a second, Tia, on how does it progress?  So is it just—Nicole, you just keep getting more and more of these B cells, and they don’t die?

Dr. Lamanna:      

I guess the one thing we forgot to mention, also, is remember this is very different than a solid tumor, as I alluded to before.  People always ask me: where has it gone and what can it do, and where is it going?  This is a blood disorder.

And as Andrew had already alluded to, this is in your blood marrow.  Your blood cells are all over.  And so when they say has it gone here or there, think of it as it’s circulating all over.  So if we were going to take a biopsy of your toe, we’re going to see CLL cells.  So that’s not uncommon.  So when people think about this, you just need to think of it as it’s circulating all over, and so you have it all over because the blood circulates everywhere.  Not to think of it like a solid tumor where you say I have metastatic disease, and so it’s in my bones.  It’s a very—it means something extremely different.

And so when people ask you what stage am I, it’s a little bit different.  You have to be wary of what that means for your disease, because it’s a blood cancer.  So it’s very, very different.  So in terms of when we think about—or are concerned about that people—or their disease is growing, and they might be closer to needing therapy, usually we’re looking at your good counts.  We’re looking at your red cell count, your platelets and your neutrophils.  If those are declining and we’re concerned that you're going to have even more symptoms from your disease, so the red cells, think of the ones that give sort of like the gas in the car of your tank. They give you energy.

And if you're very anemic—although there are many different reasons to be anemic, and that’s important to work up as well, but if you're anemic due to the CLL, then you're gonna feel even more tired.  You're gonna get short of breath when you walk up the stairs or when you're doing exercise.  And so that would be a reason to treat somebody.  If the platelets were very low, think of the platelets as they help you with clotting.  So if you cut yourself, they help you with stopping you from bleeding.  So if somebody had very low platelets that we were concerned that you might be bruising or could have spontaneous bleeding, that might be another reason we would treat you.

And then, of course, there are some individuals that have a lot of infectious complications.  We talked about the immune system.  And so it’s not just a disorder that affects the numbers and the blood counts.  But obviously, it has a lot to do with other regulatory cells in your body that we’re still learning about and that we’re still trying to target and figure out better ways to handle your immune system.  And so if you're having lots of infections because the CLL is progressing, that might be another indication to intervene for your disease.

And then, of course, there are some individuals who have very big and bulky lymph nodes.  So you have to think that the lymph nodes are part of your blood system.  And so they can become enlarged by the lymphocytes. And if they have big and bulky lymph nodes that might be impacting or affecting organ function, that might be yet another reason to treat your disease. 

Dr. Keating:         

I have to say that if you have something when you're trimming your toenails once every year or two and you see some funny thing there, it’s probably not CLL.

They may float around there, but not everything that happens in your life is CLL.  There are other things that happen. 

Andrew Schorr:                   

It can be crazy-making when you start saying this is all around my body—everything is part of CLL.  It may not be.

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 January 22, 2016