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What Factors Contribute to CLL-Related Fatigue?

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Published on November 19, 2018

Why do many chronic lymphocytic leukemia (CLL) patients experience fatigue? Does fatigue level correspond with a patient’s CLL? At a recent CLL Town Meeting in Atlanta, renowned experts Dr. Kerry Rogers, from The Ohio State University Medical Center, and Dr. Jonathon Cohen, from Emory University School of Medicine, discuss the hallmarks of CLL-related fatigue, signs it needs to be treated and how doctors find a balance between treating the cancer and side effect management. The panel also explains how other medical issues may manifest as fatigue. Watch now to learn more.

This town meeting was produced in partnership with Winship Cancer Institute of Emory University and sponsored by AbbVie, Inc., Pharmacyclics, LLC and TG Therapeutics.

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Transcript | What Factors Contribute to CLL-Related 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.

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.

Jeff Folloder:

Kerry, if you’ll allow me, I want to dial back just a moment and go a little bit deeper into a term you used a couple of times. 

Dr. Rogers:                 

Yeah. 

Jeff Folloder:               

That term being fatigue. 

Dr. Rogers:                 

Yeah. 

Jeff Folloder:               

Anyone here in this room experience fatigue, raise your hand. Okay, pretty much everybody here. We’re not talking about just needing a nap, are we? What is fatigue? What is CLL-related fatigue? Let’s put a label on this.

Dr. Rogers:                 

Yeah, so, fatigue is actually one of the most difficult things to talk to people about because it’s really hard to know, it’s complex. A fatigue that I think would be problematic, or something that needs to be addressed with the CLL treatment is fatigue that’s really limiting someone’s activities on a routine or ongoing basis. But I just wanna add here, because this is such an important issue for people, is that not all fatigue in people living with CLL is from the CLL. I’ve actually diagnosed a couple people with sleep apnea that had CLL, and then they got the sleep apnea treated and felt very much better. So, treating the CLL would not have taken care of that person’s fatigue, they also had this other problem

And one of my colleagues diagnosed someone’s sleep apnea and it turns out his wife had it too, so now they have his and her CPAP machines, they’re doing really well. So, it’s one of those things where CLL definitely can cause fatigue, it’s sometimes hard to know what else is causing it too, because there’s other medical problems like sleep apnea that can do it. Then also, that’s why it’s so key to know what’s going on in people’s whole world and not just with their bloodwork. Because to figure out what it is that’s making people fatigued is sometimes difficult, and a lot of times people will tell me, well, I’m very tired, yes, but also, I just went on a cruise around the Mediterranean, and this, and that, and the other thing, it’s not my CLL. I say okay that’s fine.

The things that I know are a hallmark of CLL-related fatigue are really stuff that limits the activities where you can’t find something else that’s causing it. And I’ve seen a few people that just had fatigue to the point where they weren’t functional and they didn’t actually have too many other of those markers I discussed with the lab work and the lymph nodes, but this person took a CLL treatment and is now back to her life. Maybe still has some fatigue but is ecstatic to be back to doing what she wants to do. So, I don’t know if that’s helpful because it’s such a complex topic.

Jeff Folloder:               

I think it is.

Dr. Rogers:                 

It’s kind of like a pool of things that go into that fatigue, and CLL can be a big piece or a smaller piece for each person. 

Jeff Folloder:               

You have something to add? 

Dr. Cohen:                  

No, I was just going to—I completely agree with everything that Kerry is saying, I find that for most of my patients that are in a watch and wait program, that’s probably what we spend the majority of our time discussing is fatigue. And the reason is that fortunately we have very effective therapies for CLL that can make the numbers look better. But, and I counsel patients that just because you may have some fatigue and we may treat you, your numbers may look better and you still may be fatigued. And so, I think Kerry’s exactly right that you really have to think about everything that’s going on with that patient.

There can be other things going on, sometimes too, like depression or anxiety can sometimes manifest as fatigue, other disorders. And then as Kerry as mentioned what people experience as fatigue is different for every individual patient. So, somebody may be working a fulltime job but they notice that they’re having to take, they’ve never taken a day off work in their life and they had to take off some days of work in the last month or so. And even though they’re functioning normally on many days they’re starting to have more of an impact on their life. And the last thing I would point out as Kerry mentioned is that it doesn’t always correspond with what we’re seeing in the blood work, or on scans, or an exam. 

Jeff Folloder:               

Sometimes it’s the fact that you at the entire large pepperoni pizza and just need a nap.

Dr. Cohen:                  

Right. It could be. Right. There’s that. So, there could be things like that, but we have some people that have, we have a limited burden of disease objectively that are very fatigued; and other people who have a white blood cell count of 300,000 and lymph nodes in a number of places that we can feel that have almost no symptoms. So, it really is an individual discussion.

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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