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Fatigue is one of the most common chronic lymphocytic leukemia symptoms. At the same time, it is one of the most commonly overlooked and undertreated.
Cancer-related fatigue (CRF) can be caused by the cancer itself, its treatment, or complications of both.
Our study of over 1,100 CLL patients showed that more than half experienced fatigue during the “watch and wait” period.
CLL fatigue is different from simply being tired. Resting often won’t overcome the exhaustion. This fatigue can be more than an annoyance. It can be overwhelming.
It is important to be sure that you are dealing with simple fatigue. Let’s look at the “differential diagnosis”.
Fatigue can be related to, but is clearly different from, sleepiness. Sleepiness is resolved by getting more sleep.
Sometimes patients confuse shortness of breath (dyspnea) with fatigue, but it is a separate problem. It requires a different work-up and calls for different therapies.
Fatigue is a common symptom of problems other than CLL, so it is important to rule out causes that may or may not be related to the CLL.
A good work-up should check for significant anemia. Mild anemia is usually well tolerated and doesn’t cause significant fatigue. Blood chemistries should be looked at to rule out thyroid, liver, kidney and other diseases.
Anxiety (which is common in CLL), chronic pain, occult infections, stress, depression, and other chronic illnesses can contribute to fatigue. Your Health Care Providers (HCP) can conduct simple screening tests. Treatment can often be effective once a specific diagnosis has been made.
If there is no clear cause found for your fatigue other than your chronic lymphocytic leukemia, what can be done?
Non-medical interventions: The first step is to recognize how common fatigue is and realize that there are real reasons for it. You are not just being lazy. Don’t blame yourself.
CLL is a disease of the immune system. One theory for the fatigue is that in CLL, cytokines, which are enzymes released by white blood cells in response to inflammation, can reach high levels.
That can lead to persistent fatigue. Being a cancer patient often means being chronically “inflamed.”
The next step is the basic advice any parent might give: Eat well, stay hydrated, get enough restorative rest and sleep and remember to pace your activities. Take breaks. Prioritize and delegate activities. Be kind to yourself if you don’t complete everything on your “to-do” list.
Paradoxically, there is solid proof for cancer patients that the more you exercise, the more energy you will have. So, if your HCP approves, do push yourself to exercise. Walking is often a good choice.
While there is no magic pill for overcoming fatigue, there are some effective “off label” options that you could discuss with your HCP. Armodafinil and modafinil are medications ordinarily used to treat sleep-related disorders. Methylphenidate (Ritalin) is a controlled substance commonly used for ADD (Attention Deficit Disorder) and related issues. Any of these may help control CRF.
A more radical option: Ruxolitinib (Jakafi), a powerful drug that is used to treat myelofibrosis, has been shown in clinical trials to improve CLL-related fatigue. This should only be used as part of a clinical trial.
Finally, sometimes the most effective way to treat the fatigue is to treat the root cause of it, the CLL itself. If a large amount of chronic lymphocytic leukemia or high “tumor burden” is resulting in overwhelming fatigue, treating the CLL is a real option to be considered in consultation with your treatment team.
Talk with your HCP. Talk to other patients in a support group. You are not alone. Fatigue is a common problem and there are options for help.