What Are the Symptoms of CLL?

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What are the symptoms of chronic lymphocytic leukemia (CLL)? A panel of experts, including Drs. Alessandra Ferrajoli, Nitin Jain and Javier Munoz, discuss common symptoms—such as night sweats, swollen lymph nodes and fatigue—that people living with CLL can experience.

Sponsored by the Patient Empowerment Network, which received educational grants from AbbVie and Genentech.

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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:

Okay. Dr. Ferrajoli, so one of the things on the slide there is what are the symptoms? And I’m going to tick off some. Tell me if I leave off some. So certainly, in the blood count, higher white count, I know I developed lymph nodes on the side of my neck and in my groin, places like that.

Anybody have night sweats? So a few people, night sweats, so that would be another symptom. Fatigue, anybody have fatigue?  Pretty common in CLL.  And maybe at risk for infection? Did I leave something out?

Dr. Ferrajoli:       

Those are the most common ones. And we have to remember that, in a number of people, actually, the diagnosis is done just by chance by doing a blood count, for example, because your work requires it or to get an insurance.  The only one that you have left are the most rare occasion that we can have patients that, at the time of the CLL diagnosis, they already have a problem like a severe anemia, because they are destroying their own red cells, or the platelet count can be very low, again, related to CLL. So they can be occasional.  But those are rare.  In the majority of cases, you covered everything.

Andrew Schorr:                  

All right. Dr. Munoz, let me ask you this. So the bone marrow is kind of a confined space, and it’s sort of the blood cell factory, right? So we’re making these lymphocytes in there, a lot of them, taking up some space. And they’re not great.  So she’s talking about anemia and low red cells and problems with—is that because there’s not room? What’s going on there in this blood factory?

Dr. Munoz:

Suffice it to say, there are many causes of anemia in a patient with CLL. And it could be definitely because the bone marrow, the bad cells, the leukemic cells, are crowding out the normal cells. So that is definitely one of the causes that we see of anemia.  There are autoimmune phenomena as well. That would be your body getting confused and attacking your own red blood cells or platelets causing low counts.

There is autoimmune hemolytic anemia.  There is idiopathic thrombocytopenic purpura causing low platelets.  There is pure red cell aplasia sometimes seen as well. Finally, the spleen can be enlarged sometimes in patients with CLL, and this can cause sequestration.  It can highjack some of those red blood cells and platelets, and they could be lower when we test them in the peripheral blood.

Andrew Schorr:

And George is going to tell us later how your spleen has gotten enlarged now. And I know any of you go to the doctor, the doctor pokes around like that, right, trying to feel the spleen.  And so that’s what happens, right, Dr. Jain? The spleen kind of sucks these cells in, right?

Dr. Jain:

Right. So for splenomegaly, or enlargement of spleen, is one of the signs and symptoms.  And the symptom would be pain in the left upper quadrant, which is right around here.  And the symptom for big spleen will be generally patients will say that they cannot eat a large meal.

In medical terms, we call it early satiety. So there patients will be able to eat small meals but not a large, full meal.  Right. So when the spleen gets enlarged, it just mops up all of the platelets within the spleen and can also decrease the platelet count of our patients with CLL.

Andrew Schorr:

All right. Has anyone had their spleen taken out?  There’s a gentleman back there.  So what about that today? You have a lot of new drugs, some have reduced the blood counts pretty rapidly.  So where are we headed as far as needing to take the spleen out? And if you take the spleen out, is that a big problem? Or is it like your appendix, you don’t really need it?

Dr. Jain:

Right. So I think the spleen out or splenectomy, I think it’s becoming rarer and rarer these days for patients with CLL because of the new drugs. And I’m sure we’re going to talk about it, are very, very effective in decreasing the size of the spleen improving the blood counts.  So the need for spleen to be taken out, I mean, there are rare cases where we will do that, especially if the spleen is so big that it’s causing a lot of pain, discomfort.

But again, those are really rare situations.  Now, spleen is also an important organ in the sense that patients who get the splenectomy, they need to have certain vaccinations prior to getting the spleen out because of the risk of infections after splenectomy.  So unlike appendectomy, appendix is not really an important organ for our body. Taking the spleen out can have some consequences.  And it’s a big surgery. So I think those considerations need to come into play.

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 June 17, 2015