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Why Is CLL So Varied?

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Published on June 24, 2016

Why does CLL vary so much in patients?  With Andrew Schorr as our host, Patient Power delves into this question with two CLL specialists, Dr. Nicole Lamanna of Columbia University Medical Center, and Dr. Philip Thompson of MD Anderson Cancer Center.  Together, Dr. Lamanna and Dr. Thompson discuss the genetics of oncogenes and the benefits of genetic testing.  “CLL really isn’t one disease.  It has genetically distinct subtypes.”

Provided by CLL Global Research Foundation, which received support from Acerta Pharma, Gilead Sciences, Inc., Pharmacyclics, Teva Pharmaceutical Industries Ltd and TG Therapeutics, Inc. and the Patient Empowerment Network, which received support from AbbVie Inc. and Genentech Inc. It was produced by Patient Power in partnership with The Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center.


What a wonderful time we had! We were excited like fans at a rock concert, but our rock stars were the medical experts.

— Lynn, CLL town meeting attendee


Columbia University Medical Center CLL Global Research Foundation


Patient Empowerment Network

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Transcript | Why Is CLL So Varied?

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:

Now, Phil, you said CLL is not the same for everybody, and I mentioned that. So why does it progress in some people and not in others?

And we’re gonna get into testing and all that. But just—it’s very variable, isn’t it?

Dr. Thompson:  

Yeah. So I think it speaks to how we have historically classified diseases. Historically, we’ve looked down the microscope at these cells, and we’ve said, well, those look the same. And so that’s this disease. And then increasingly, we’ve developed more sophisticated tools to look at, well, what’s actually happening in these cells? What’s gone wrong with them? And so CLL, which looks the same from patient to patient when you just look at it under the microscope, is genetically incredibly different from patient to patient. So the same—despite looking the same, whatever happened to the cells to make them into a cancer is different from person to person. And that’s what actually drives the behavior of the cells, and that’s why it’s so different from one person to another.

Andrew Schorr:                  

Um-huh. So Nicole, is that why now one person’s CLL, as he said, is different from another. And what you’re trying to do is do that testing and analysis with these genetic tests upfront to get a clearer picture of what a treatment plan might be, and somebody says, well, what’s my future?

Dr. Lamanna:      

Yeah. I mean, so it’s important that—the reason why we try to, even if in the beginning, we may say you don’t need therapy right now, it’s still important to do some of these tests just because it will help us define your disease better than another individual. It may tell us about when you might need therapy. It might tell us what therapies actually might work better for you. I think up to this point, what Phil was saying is true, that because the disease behaves so differently in different individuals, this is why we’ve been having so much difficulty all these years finding a cure, because it really isn’t one disease. It has very genetically distinct subtypes that as we learn more and more about the biology, we’re finding better therapies, newer therapies, targeted therapies. And for sure, some therapies will absolutely be recommended over others now with some of these new agents, because they work better on certain subtypes. 

So it’s really, really important to do this testing initially, even if it may not initially change the management of your disease. And certainly, if you require alternative therapies down the road, we oftentimes will repeat this testing, because it may become important again, depending upon what is involved with your disease compared to someone else.

Andrew Schorr:                  

Okay, one thing about genetics. So we usually think of genetics as do you have blue eyes or brown hair, or dark skin or light skin. Genetics, right? Or my mother or father, I don’t remember which, gave me this—loss of my hair, right? Whatever, genetics, hereditary. But when we’re talking about genes here, we’re talking about I think what you’d call onco genes, right? And then we get into these numbers and 17P and 11Q. All these things. So we’re talking not about hereditary. 

Dr. Lamanna:      

No. So these are abnormalities that we find on your CLL clone.

So this is not all over. This is really specifically to your CLL cells. And so that’s what we talk about when we’re talking about genetics. We’re not talking about your DNA in that sense with the rest of your normal healthy cells. We’re talking about abnormalities that are distinct to your CLL cells and what they may mean for you. And that’s what we’re testing for.

Andrew Schorr:                  

All right, Phil, so if somebody were certain flavored genes at time of diagnosis, she mentioned retesting later. Why? Wouldn’t the genes just stay stable?

Dr. Thompson:  

Well, in many cases, yes, but in a smaller proportion, no. So there was actually a recent publication that had looked at it in quite an elegant way with what we call next-generation sequencing, where you can detect very small what we call sub-clones of CLL. So you might have most of your CLL being the same, but one cell has at some point acquired a new abnormality.

And over time, the number of cells with that abnormality can change. And that can be important for therapy. So if you look at time zero, and then you look three or four years down the track, there may be a new abnormality that you detect that wasn’t there previously. Additionally, the technology changes over time, and so it can be very important to look again prior to treatment.

Andrew Schorr:                  

Okay. Maybe we can get a camera to look at the audience for a second. I’m gonna ask for a show of hands on a couple things. So first of all, is there anyone here—we’re gonna look at this term, SLL. Anybody who’s been told they have SLL? Anybody? Yeah, there’s a lady over on the left. Anybody else? We’re gonna find out what SLL is. And also, just understand how long people have been living with CLL. So Andrew here, 20 years. Anybody between 15 and 20 years, just raise your hand? Yay. Okay.

All right. Thank you. These are my friends on the Internet, some of them. And how about between five and 10 years? Plenty. Okay. And then what about between one and five years or even just very recently diagnosed? So we have a few people, and hopefully we’re explaining things to you and your loved ones, okay? So if you have questions and we talk lingo, and you don’t get it, say what are we talking about, okay? All right.

So let me just mention this SLL, because that comes up sometime. Nicole.

Dr. Lamanna:      


Andrew Schorr:                  

What is SLL, and what is its relationship to CLL? 

Dr. Lamanna:      

Yeah, absolutely. So I think the terminology gets very confusing for patients. But it really is—SLL stands for small lymphocytic lymphoma, okay? CLL is chronic lymphocytic leukemia. They’re a disorder of the same B cell. So they’re under the microscope, exactly the same, okay? But what they mean if your doctor says, oh, well you have SLL, what they’re really referring to is that you solely have lymph node involvement.

So we know that CLL—we were just talking about the bone marrow before. But CLL also involves the lymph nodes. Think of the lymph nodes as part of your—they’re part of your hermatapoietic, or your blood system, and they actually help fight infection. We all have lymph nodes. But the lymphocytes can aggregate in those lymph nodes and become plump over time. 

And so for patients who have CLL, you can have both bone marrow involvement, lymph node involvement, even organ, so spleen and liver. Think of the spleen as a big lymph node. But SLL patients are truly patients who have just lymph node involvement. Their bone marrow doesn’t have the lymphocytes infiltrating their bone marrow. So they tend to be the same—we treat you guys the same, okay? You just don’t have bone marrow involvement. And sometimes the doctors loosely throw the terms around, because you might actually have some bone marrow involvement. But because your disease is mostly lymph node, or you have bulky lymph nodes, they might just say, well, you’re SLL-like. It’s the same thing. Don’t get confused.

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.