Typical signs and symptoms that may indicate it is time to initiate therapy in a patient with chronic lymphocytic leukemia.
PUBLISHED March 25, 2019
Nicole Lamanna, M.D.: The indications for treatment for most patients, while there are some outliers, the majority of patients are treated if their white blood cell count—it’s not the absolute number—but think of this as a disorder of your bone marrow. This is where you make all of your leukemia cells, but also all of your normal cells. And so, if these leukemia cells, these lymphocytes, crowd out the normal bone marrow, your good counts start to drop. That’s when patients can become symptomatic from their disease. Think of your red cells as energy cells. They carry oxygen to all of your organs. If your red cells get very low, if you’re doing activities or exercising or carrying a load of laundry, you may feel more fatigued or tired. That’s referred to as anemia, so you might hear that a lot. If somebody were to become anemic, that would be a reason to treat them, so that they can go on doing all the things they like to do.
The platelets are also part of your blood counts, which help with clotting. If your platelets dropped and became very low, you’d be more prone to bleeding and bruising. Or if you needed surgery and the platelets were low, that would put you at complications for bleeding during surgery. So if your platelets were low, that would be another reason to treat.
The other part of your white blood cell count that we watch a lot happens to be the neutrophils, and they help fight infections. If their neutrophils are low, that would be another reason to treat somebody, because we really try to avoid our leukemia patients getting sick all the time from various infections. So from a blood count perspective, it’s not that your white blood cell count is the reason to treat somebody, or the lymphocyte count. When the doctors look at your blood counts and they follow you, they’re looking at the tempo of your lymphocytes, or what your white blood cell count is doing.
If somebody‘s lymphocyte count is rising very quickly, within a very short period of time—if somebody goes from 20, to 40, to 80 over several months—that triggers to the doctor that the disease is picking up in the marrow, where you make these cells, and they might have to watch that person more closely because their good counts are going to start to fall. And that’s when we try to intervene. When the good counts start to fall, we want to try to intervene before somebody is really symptomatic from having those good counts get too low.
The other main reason we treat people is that they might have big and bulky lymph nodes. As I referred to earlier, when I said small lymphocytic lymphoma, or SLL, we all have lymph nodes that are part of our body and help our immune system. If the lymphocytes, which are in the lymph nodes, start getting more infiltrated, so they aggregate in your lymph nodes, your lymph nodes can become enlarged or bulky. And so, for patients who have really bulky lymph nodes — 5, 10-centimeter lymph nodes—the lymph node may start compressing on an organ. That’s why, when you go to the doctor, we draw your bloodwork but also examine you to see if they’re big and bulky. Are they causing you any symptoms?
Those are the two main reasons why we treat somebody with CLL [chronic lymphocytic leukemia]: Their blood counts start becoming poor or they have big and bulky lymph nodes. CLL, remember, because it’s a blood disorder, circulates all over in your body. People often ask me this when we talk about staging for CLL. I think this is unique when you compare this to solid tumor cancers, where you think if there’s a mass and it spreads, it’s metastatic. You have to think of CLL as: This is a blood disorder, it circulates everywhere, and it is everywhere. And I think you use that as a better concept of, “I either have CLL and I need treatment for it, or I don’t.” When you look at staging for CLL, it helps the doctor when you’re first diagnosed.
In other words, staging has to do with as the disease advances, your good counts start getting low—everything I referred to. If you’re diagnosed and initially your blood counts are poor, that signals to you and the doctor that you’re going to likely need treatment sooner than somebody who is diagnosed who just has an elevated white count. That’s what the staging system refers to. That’s the only time it’s very helpful, because it kind of is a lead-in to the doctor about when that person might need treatment if they’re already presenting with poor blood counts, or bulky lymph nodes, or bulky disease. Other than that, it doesn’t really help you think about things differently. So you’re either getting treatment or you’re not getting treatment.
People can have CLL involved in their spleen, so we’re going to talk about that. Danise is very familiar with that. Think of your spleen as a big lymph node. It is a bulky organ. And so, if people have a very enlarged spleen; it can be involved in their livers as well. As I said, these cells circulate everywhere. If those organs become plump and big, you feel like you’re pregnant. You feel like it’s occupying space. People can be uncomfortable or they can lose weight because they get full quicker because their abdomen is filled with big and plump organs. That might be another reason, we consider those folks to fit in the bulky category. That would be another reason to treat—big, bulky lymph nodes, or organ disease, or poor blood counts.
There are, I like to say, three major flavors of patients with CLL. There are some people who don’t have big lymph nodes. They need to start treatment because their blood counts become poor. There are some people who really only have lymph node, or organ, big spleen, big liver; their blood counts are fine. Those are, again, the small lymphocytic lymphoma patients. That’s the only reason for their treatment. And there are some people who have both. As their disease progresses, their lymph nodes grow and their good counts start getting poor. They really need treatment for both reasons. Those are the big flavors. Danise, what were the indications for you when you first were told you need treatment?
Danise Hoover: Well, my white count was very high, and my spleen was very big. I had no other lymph nodes involved. You couldn’t feel any other lymph nodes. It was just my spleen that was quite large and that’s when they decided to treat.
Nicole Lamanna, M.D.: Were you symptomatic at all from the big spleen, or you just kind of knew that it was there? Or did you notice that you weren’t eating as much?
Danise Hoover: I wasn’t eating as much. I lost five pounds without trying, which is kind of unheard of for me. And I couldn’t sleep on my stomach. It was like being pregnant again.
Nicole Lamanna, M.D.: Yes. So that absolutely is one indication for treatment, right? In Danise’s case, her white cell count was going up, but she also had big, bulky disease. In this case, it was her spleen and she was starting to get symptomatic from that. Now, could she have gone on longer? Sure.
Danise Hoover: Sure.
Nicole Lamanna, M.D.: But eventually, when patients get more symptomatic, it gets more difficult for them. And certainly, they may be at risk for having more issues when they start any type of therapy because they’re already not feeling so good. So the doctors try to intervene before somebody gets too symptomatic from their disease, so that we can sort of correct that for them. Then the treatment will be less difficult.