Chronic lymphocytic leukemia is a type of progressive cancer of the blood and bone marrow. Also known as B-cell chronic lymphocytic leukemia (CLL), this type of cancer develops in white blood cells known as B cells. It has a very slow progression rate and is known to usually affect older adults. Chronic lymphocytic leukemia may not cause any signs and symptoms for several years, and when the symptoms do occur, it is typically a sign that the cancer is progressing. The early symptoms of this cancer are usually minimal, and most people will be told to take a watch and wait approach right after diagnosis. Once the disease progresses, the symptoms, side effects of the treatment of chronic lymphocytic leukemia, and the challenge of living with a chronic disease can start to have a profound impact on the quality of your life. So how does chronic lymphocytic leukemia affect the quality of life?
How Does Chronic Lymphocytic Leukemia Affect Your Life?
The early symptoms of chronic lymphocytic leukemia (CLL) are not very severe, and most people do not even experience any symptoms until the disease progresses to a more advanced stage.(1,2,3) Immediately after the diagnosis of chronic lymphocytic leukemia, your doctor is likely to recommend a watch and wait for approach instead of beginning treatment.(4) Signs that indicate your disease is progressing include unintended weight loss, fatigue, night sweats, fever and severe and frequent infections.(5)
Additionally, once the treatment for chronic lymphocytic leukemia begins, you are also likely to experience some of the side effects of chemotherapy or targeted therapy. Even immunotherapy medications can have side effects. The symptoms of chronic lymphocytic leukemia and these, along with the side effects of cancer treatment, combined with the challenge of managing a chronic disease like chronic lymphocytic leukemia, can end up having a profound impact on the overall quality of your life. While, of course, certain life changes are inevitable after receiving a cancer diagnosis, there are certain things you can do and tips you can follow to reduce the adverse effects of chronic lymphocytic leukemia on your life.
The most important thing for managing your quality of life is to be aware of what you can expect and know how chronic lymphocytic leukemia affects your life.(6)
Impact of Chronic Lymphocytic Leukemia on Physical Abilities
Most people with chronic lymphocytic leukemia get diagnosed when the cancer is still at an early stage, and most of them do not experience any physical symptoms. At this stage of diagnosis, you are unlikely to experience any type of physical challenges in your daily life. However, as your cancer progresses, you may start to feel more tired and short of breath more often. You may find that you need to rest and recharge more frequently during the day in order to maintain your energy levels. Fatigue is one of the most common physical symptoms of chronic lymphocytic leukemia, even in people who are diagnosed at an early stage.(7)
Treatment for chronic lymphocytic leukemia can also lead to many physical side effects, including hair loss, nausea and vomiting, and chronic infections. (8) If you experience any such types of side effects, you should speak to your doctor to figure out what can be done to reduce these side effects.
Impact of Chronic Lymphocytic Leukemia on Mental Health
After a diagnosis of chronic lymphocytic leukemia at an early stage, doctors typically recommended to follow a ‘watch and wait’ approach.
However, even though this is the standard approach of doctors, people find it challenging to get through every day, knowing that they have cancer and that it is progressing. You are likely to feel that you cannot do anything about this situation. Uncertainty about the future looms over your head, along with considerations of how your family members will deal with the news of cancer. The impact of the disease on your ability to work and finances will also take a toll on your mental health.
A study found that over half of the patients report being stressed and thinking about their diagnosis every day.(9) Another study discovered that nearly one-fifth of people with chronic lymphocytic leukemia experience very high levels of anxiety. People who were undergoing active treatment reported even worse anxiety.(10)
Due to the high levels of stress associated with chronic lymphocytic leukemia, having the right kind of emotional support is essential for people who have been diagnosed with this cancer. If you find yourself frequently worrying about your diagnosis, your finances, and how the cancer will impact your life, you should consider meeting a mental health professional or counselor. Joining a cancer support group may also help.
Impact of Chronic Lymphocytic Leukemia on Sleep
Once you start experiencing the symptoms of chronic lymphocytic leukemia, you may find yourself waking up with night sweats. This makes it difficult to sleep properly at night. Furthermore, anxiety and high levels of stress also have an adverse impact on your sleep.
It is important that you establish proper sleep hygiene to manage such sleep issues with chronic lymphocytic leukemia. Some tips you can follow include:
- Going to bed at the same time each night
- Calm yourself before bed with by listening to relaxing music or a warm shower or bath
- Have a comfortable bed and bedding
- Avoid using your mobile phone, TV, or computer just before bedtime.
- Try to keep your bedroom cool, dark, and quiet.
Exercising during the day, reducing your stress by techniques like deep breathing exercises and meditation, and drinking plenty of water can also help improve your sleep quality, as well as your overall quality of life.(11)
Impact of Chronic Lymphocytic Leukemia on Finances
There is no doubt that healthcare can be an expensive affair, especially if you don’t have health insurance. Regardless of whether you are still able to work or not, any type of chronic disease such as cancer is going to get you worried about your finances. This is the time to take advantage of any and all financial resources that are available to you.
There are many non-profit organizations that can help you by providing advice on where all you can get financial help from. If you are in the United States, you can seek help from organizations such as Leukemia and Lymphoma Society (LLS) and Patient Access Network (PAN) Foundation.(12,13) A social worker can also guide you about any issues with insurance.
Impact of Chronic Lymphocytic Leukemia on Social Life
When you are diagnosed with chronic lymphocytic leukemia, you are bound to have high levels of stress and anxiety. Furthermore, being tired all the time is going to make it difficult for you to maintain an active social life. However, this does not mean that you can’t have any social life whatsoever.
Focus on staying close to your friends and family after getting your diagnosis. You may find that discussing about your diagnosis with your loved ones helps you feel more relaxed and less worried. Many people often find that speaking with a social worker or a mental health counselor helps them improve their communication with loved ones.
Most people get diagnosed in the early stages of chronic lymphocytic leukemia, and there are no disease-related signs and symptoms at this stage. However, as the cancer progresses, people with advanced-stage cancer, especially those who are already undergoing treatment, are likely to feel tired, sleep issues, pain, and other symptoms affect their quality of life. Some people find it challenging to deal with the physical symptoms of the disease, while others fall into depression due to the stress of dealing with a chronic illness like cancer.
You should always seek help from your doctor if you feel you are unable to face the challenges of your condition. Your doctor can refer you to other healthcare providers like mental health professionals, nutritionists, and physical therapists, who can help you manage these challenges and improve your quality of life.
- Chiorazzi, N., Rai, K.R. and Ferrarini, M., 2005. Chronic lymphocytic leukemia. New England Journal of Medicine, 352(8), pp.804-815.
- Rozman, C. and Montserrat, E., 1995. Chronic lymphocytic leukemia. New England Journal of Medicine, 333(16), pp.1052-1057.
- Rai, K.R., Sawitsky, A., Cronkite, E.P., Chanana, A.D., Levy, R.N. and Pasternack, B.S., 1975. Clinical staging of chronic lymphocytic leukemia. Keating, M.J., 1999, October. Chronic lymphocytic leukemia. In Seminars in oncology (Vol. 26, No. 5 Suppl 14, pp. 107-114).
- Foon, K.A., Rai, K.R. and Gale, R.P., 1990. Chronic lymphocytic leukemia: new insights into biology and therapy. Annals of Internal Medicine, 113(7), pp.525-539.
- Shanafelt, T.D., Bowen, D., Venkat, C., Slager, S.L., Zent, C.S., Kay, N.E., Reinalda, M., Sloan, J.A. and Call, T.G., 2007. Quality of life in chronic lymphocytic leukemia: an international survey of 1482 patients. British journal of haematology, 139(2), pp.255-264.
- Westbrook, T.D., Maddocks, K. and Andersen, B.L., 2016. The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia. Psychology & health, 31(7), pp.891-902.
- Holtzer-Goor, K.M., Schaafsma, M.R., Joosten, P., Posthuma, E.F.M., Wittebol, S., Huijgens, P.C., Mattijssen, E.J.M., Vreugdenhil, G., Visser, H., Peters, W.G. and Erjavec, Z., 2015. Quality of life of patients with chronic lymphocytic leukaemia in the Netherlands: results of a longitudinal multicentre study. Quality of Life Research, 24(12), pp.2895-2906.
- Shanafelt, T.D., Bowen, D.A., Venkat, C., Slager, S.L., Zent, C.S., Kay, N.E., Reinalda, M., Tun, H., Sloan, J.A. and Call, T.G., 2009. The physician–patient relationship and quality of life: Lessons from chronic lymphocytic leukemia. Leukemia research, 33(2), pp.263-270.
- ONS Voice. 2020. Patients With CLL Report Worse Qol And Other Factors. [online] Available at: <https://voice.ons.org/conferences/patients-with-cll-report-worse-qol-and-other-factors> [Accessed 28 September 2020].
- Molica, S., 2005. Quality of life in chronic lymphocytic leukemia: a neglected issue. Leukemia & lymphoma, 46(12), pp.1709-1714.
- Lls.org. 2020. Leukemia & Lymphoma Society | Donate Today!. [online] Available at: <https://www.lls.org/> [Accessed 28 September 2020]. PAN Foundation. 2020. Chronic Lymphocytic Leukemia – PAN Foundation. [online] Available at: <https://www.panfoundation.org/disease-funds/chronic-lymphocytic-leukemia/> [Accessed 28 September 2020].