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What Are the Common Symptoms of CLL?

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Published on November 29, 2017

While some chronic lymphocytic leukemia (CLL) patients are asymptomatic, the disease can cause a wide range of symptoms—and indicate disease progression. Dr. Stephen Spurgeon, from the OHSU Knight Cancer Institute, describes common CLL symptoms and their implications.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences, TG Therapeutics, Pharmacyclics LLC and Janssen Biotech, Inc., and Genentech. Produced by Patient Power in collaboration with The US Oncology Network, Compass Oncology, and Willamette Valley Cancer Institute and Research Center.

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Transcript | What Are the Common Symptoms of CLL?

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.

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:

So, Dr. Spurgeon, let’s just go over the symptoms for a second, because people have had different ones. So maybe you could rattle off the variable symptoms of CLL.

Dr. Spurgeon:     

Yeah, so it is highly variable and increasingly, as more and more people just get a standard CBC as part of their medical care, and as our ability to detect abnormalities in blood—different populations of different blood cells—we definitely have a lot of patients that walk in feeling fine to their doc, no issues, and lo and behold, “Oh! By the way, you’ve got leukemia.” So, a lot of people, it’s not impacting their lives at all. And I think that’s a key point, is that at that point it’s really learning to continue to be a person, not a patient. Typically, we tell people, “You know, you’ve got this diagnosis." I’m just curious, sorry to ask the questions but how many people in this room had their—someone say, “Oh, you’ve got leukemia but if you’re gonna have leukemia, this is a good one to have?”

Andrew Schorr:

Everybody.

Dr. Spurgeon:     

How many people felt good about that statement?

Audience:            

No! 

Dr. Spurgeon:     

So, I think that kinda highlights the point, that this is still a serious diagnosis and it’s—“I’ve got leukemia, and you’re just gonna watch me?” And we recognize that, that’s a really challenging thing. And although in high-risk patients we’re sort of challenging that paradigm, it’s based on older data that says if we treat earlier you don’t do better. And there are a lot of implications for that. 

So, a lot of people come in asymptomatic, and may be asymptomatic for a long time, some for many years and some not ever needing treatment. However, the range of symptoms ranges from enlarging lymph nodes, so lymph nodes throughout the body that people can really feel; enlarged lymph nodes that become problematic, pushing against organs, more symptomatic; some people describe the left side feeling full, where the spleen is, or having to eat smaller meals because it’s pushing up against the stomach; some people may have more significant disease growth, and more rapid disease growth where it leads to profound fatigue, or night sweats, or—as this group already alluded to – with the issue with the immune function.

As the disease burden grows, you can think of these defective B cell s crowding out normal immune function, so people may have problems with recurrent infections. So those are some of the things. I think the hardest thing for all of us to understand related to CLL, because we all get tired, is fatigue. So often, I will have patients come in that have relatively stable CLL, and it’s a back and forth of, “Doc, you need to treat my CLL, because I’m tired.” 

That’s an appropriate discussion, but understanding that that fatigue mirrors disease activity, typically. So, if somebody has stable disease and no other signs of disease progression and they’re tired, well I wouldn’t want people getting chemotherapy for sleep apnea, for hypothyroidism or depression. So, I think it’s always important to rule out other things, too—especially in this greyer area of fatigue.

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.