Published on August 17, 2021
Managing Cancer-Related Fatigue in CLL
Carmen Escalante, MD, founded the Cancer-Related Fatigue Clinic at the MD Anderson Cancer Center in the late 90s. In this segment, Dr. Escalante is joined by patient advocates Michele Nadeem-Baker and Jeff Folloder to discuss what she and her team have learned about cancer fatigue and how CLL patients can better understand and manage this debilitating symptom.
Support for this series has been provided by Janssen Oncology and Pharmacyclics LLC. Patient Power maintains complete editorial control and is solely responsible for program content.
Transcript | What Is Cancer-Related Fatigue?
Dr. Escalante: We started our Cancer-Related Fatigue Clinic in the late 1990s. We've seen hundreds, thousands of patients since. It is something that is near and dear to me, because if I can help decrease and make an impact on their lives by trying to improve the fatigue, it makes a difference.
Jeff Folloder: Great. Just so that everyone knows what we're talking about, we're tossing around the word fatigue here, and I think we need to probably be a bit more specific. If I go out and play 36 holes of golf on a weekend, I'm likely to be tired and I might say that I have fatigue. What is the difference between that and what a cancer patient is experiencing?
What Is the Difference Between General Fatigue and Cancer-Related Fatigue?
Dr. Escalante: There is a specific definition of cancer-related fatigue, and you're absolutely right. When I or you or people without cancer or cancer treatment go out and do things, we become fatigued, but we rest and generally we get better. The fatigue either resolves or it decreases. Whereas, when a cancer patient often rests, the fatigue just minimally changes, so is not improved with rest.
Michele Nadeem-Baker: Personally, I know I was always... I mentioned it a few times and then I stopped. So I was like, "Well, maybe you're supposed to feel this way." Then, I pursued it again and I was told, not by my CLL Specialist, but I was told by a doctor I was referred to, that there was no diagnostic code and that just took the wind out of my sail. So, what would you say to a patient who is told that?
Dr. Escalante: Well, now there is a diagnostic code, but it doesn't matter. Back… I mean, fatigue is important and it's not just about the billing component. It's a symptom and as physicians, we treat symptoms as well as the cancer. We treat nausea. We treat bleeding and blood clots, so why wouldn't we address and treat fatigue just like we treat fever?
Michele Nadeem-Baker: When you opened the clinic, was it dismissed, fatigue, as being all in your head? Has there been a dramatic change and how have you seen all this evolve?
Dr. Escalante: So over time, I think because of our patients, because of their interests and ability to describe this to their oncologists, have become more powerful in saying we want something done about it. And have allowed me to help in navigating those evaluations and making sure patients and providers understand that this is not something in people's head.
Jeff Folloder: Thank you.
Dr. Escalante: That it is real and that it needs to be addressed.
Jeff Folloder: What causes this cancer fatigue?
What Causes Fatigue in Chronic Lymphocytic Leukemia (CLL) Patients?
Dr. Escalante: We're not sure. There's lots of hypotheses about the etiology of actually what happens, the physiology of what happens in the body, whether it's release of inflammatory substances called cytokines, whether it's a muscle metabolism issue or a hypothalamus, which is part of the brain, issue. Bottom line is, we don't really know. There's lots of interesting basic science research going on to try to discern what that is. Certainly if we can figure out the path of physiology, we may be able to target treatment better, or at least predict who may have more problems with fatigue. But we don't know.
Now when we assess for fatigue, we know it's a very nebulous symptom, meaning lots of things can impact fatigue, other symptoms, other co-morbidities, anemia, hypothyroidism. Lots of things. So, we really need to do a very intensive look at all the aspects and try to grab on to the low hanging fruit first, to try to see if we can address those and start decreasing the level of fatigue.
Jeff Folloder: What's the inventory of things that you do in your clinic to get a picture of someone's fatigue to create a plan? How does that inventory work?
What Are Some Strategies for Managing CLL Fatigue?
Dr. Escalante: Initially, on their first visit, I do a very extensive history and physical exam and the history is focused very clearly on fatigue and the aspects that affect fatigue. For example, when did it start? How long, is it every day? What's the frequency? Is it twice a week? Three times a week? Is there a pattern of the fatigue, meaning is it worse at a particular time of day? Are there factors that you're aware of that either improve or worsen the fatigue? We have a number of survey tools that we use for symptoms because we know that certain symptoms can definitely impact fatigue. For example, depression, anxiety, pain, sleep. And again, I don't treat numbers, I treat patients, but it alerts me where to look. So, if they score outside of the range, I make sure to question them about this and I correlate their story with their survey tools.
In addition, the survey tools give us an objective way, not only to measure fatigue, but the other symptoms so that when we implement a plan, we can monitor it objectively as we go forth. Because, unfortunately with fatigue, there's no blood tests or imaging tests that we can follow to determine if it's improving or worsening, so we have to use the survey tools.
Then, I do a physical exam. Honestly, most of the time, I don't find significant abnormalities on physical exam, and we have a protocol of labs. The important thing is we don't want to miss something that is easily reversible. Hypothyroidism is more common in our patients that have been radiated to the neck or had head and neck surgery or an immunotherapy that we know that can affect the thyroid. But, in all fairness, most times the labs have been addressed because they're easy to fix.
But, we have to remember that anemia, especially in patients undergoing treatment, although we're kind of immune to seeing hemoglobin of 10 and above and it's fine. In a patient that's very active, a hemoglobin of 10 certainly may be attributing. Now it doesn't mean that we're going to transfuse them for that, but we have to remind them that they are anemic and that that level may be attributing, as well. Most times, it's a multitude of things. Not just one factor, but multiple factors.