Living with CLL
Exercising with CLL1
Fatigue is one of the chief complaints of patients with CLL and many people think that rest is the best way to combat fatigue. However, research has shown that people who exercise regularly had 40% to 50% less fatigue than those who don’t. Benefits of regular exercise include improved cardiovascular function, increased muscle strength, decreased weight and increased joint flexibility. Exercise also boosts your self-esteem and mood, helping to relieve some of the depression and anxiety that is common after a cancer diagnosis.
Follow the tips below to help lead a healthy, physically active life.
- Try to get at least 150 minutes of moderate exercise (walking, gardening, canoeing) or 75 minutes of vigorous exercise (jogging, swimming, jumping rope) each week.
- Lift weights or do other strength training exercises at least 2 days a week.
- Use shorter sessions if it helps you. Several 10-minute sessions of exercise have similar health benefits as a 1-hour long exercise session.
- Start slow. Gradually increase the length and intensity of your physical activity if you were inactive before. Build up to 30 minutes of moderate or vigorous activity a day.
- Make exercise enjoyable. Listen to music or ask someone to exercise with you.
- You don’t necessarily have to go to the gym to exercise. Playing a sport, hiking outdoors, or gardening or house cleaning can all provide physical workouts. Find something you enjoy to help encourage you to keep up a program of exercise.
- Listen to your body. Don’t exercise if you are not feeling well or if you have a fever.
Vaccinating Against Infection2-6
White blood cells, or lymphocytes, are immune cells within the body that fight infection. Although patients with CLL have high white blood cell counts, these cells are abnormal and do not help your body fight infection. Patients with CLL are more likely to get infections than patients without CLL, and infections are a major cause of severe illness and death in CLL patients. The risk of infection increases with higher stages of disease, smoking, and while receiving treatment for CLL. Although patients with CLL need to take additional precautions to prevent infections, it is important to remember that you can live a full life with CLL.
The best way to prevent infections is frequent hand-washing, avoiding close contact with people who are currently or recently ill, and staying up-to-date on your vaccines. It is recommended that you receive a yearly influenza vaccine each fall and a pneumonia vaccine every 5 years. The influenza vaccine should be an injection and not the live nasal version of the vaccine. The pneumonia vaccine will be given in 2 separate visits. The first vaccine is the 13-valent pneumococcal conjugate vaccine (PCV13; Prevnar 13) and the second vaccine is the 23-valent pneumococcal polysaccharide vaccine (PPV23; Pneumovax 23), which should be given at least 2 months after the first vaccine. Since a CLL patient’s immune system is weakened, it may not produce a strong, effective response to the vaccine. It is estimated that about 60% of CLL patients will have an effective response to the PCV13 vaccine.3 Although the vaccine is not 100% effective in preventing pneumonia in CLL patients, some protection is better than no protection. Other vaccines, such as hepatitis A, hepatitis B, or meningococcal vaccines, may be recommended based on your risk of exposure.
Patients with CLL should not receive any vaccines that contain live particles of virus or bacteria as these vaccines may cause an infection in people with weakened immune systems. A partial list of live vaccines that CLL patients should avoid is provided below. If a family member or close personal contact receives any of the listed vaccines below, you should avoid contact with that person for 1 week.
Some Live Vaccines that CLL Patients Should Avoid
Live-attenuated influenza vaccine (nasal vaccine)
Herpes zoster (shingles)
Measles, mumps, and rubella (MMR)
Oral typhoid vaccine
Some patients with CLL may have low levels of infection-fighting proteins called immunoglobulins because abnormal CLL cells do not make enough of this protein. Patients who have several severe infections within a short period of time and low levels of immunoglobulin (<500 mg/dL) may benefit from monthly infusions of immunoglobulins (intravenous immunoglobulins; IVIG) to prevent future infections. However, IVIG treatments are time-consuming and may have serious side effects, so they should only be started after a careful discussion of risks and benefits between you and your doctor.
The major complications of CLL are caused by low blood cell counts and a weakened immune system as a results of disease progression or cancer treatment. Let your doctor know if you experience any of the following symptoms.
Infections are one of the most common and serious complications of CLL. Without normal immune cells to fight infections, bacteria, viruses, and fungi such as yeast can produce life-threatening infections rapidly. The most frequent infections seen in CLL patients are pneumonia, urinary tract infections, infections of the gastrointestinal system, and blood infections. Call your healthcare provider immediately if you experience any of the following symptoms:
- Fever that is 100.5ºF (38ºC) or higher
- Shaking chills
- Chest pain or shortness of breath
- Severe headache with a stiff neck
- Bloody or cloudy urine
Anemia occurs when CLL cells prevent the bone marrow from making more red blood cells. Red blood cells are necessary to carry oxygen to all the cells in the body. Symptoms of anemia include fatigue, weakness, and chest pain. If you have symptoms of anemia, your doctor may treat you with blood transfusions or drugs such as erythropoietin or steroids.
Low platelet counts occur when CLL cells prevent the bone marrow from making more platelets. Platelets are important components of the body’s blood clotting mechanism. People with low platelet counts may bleed easily, either externally or internally. A platelet transfusion may be necessary if your platelet counts do not improve with CLL treatment.
- National Comprehensive Cancer Network. Exercising During Cancer Treatment. https://www.nccn.org/patients/resources/life_with_cancer/exercise.aspx Accessed March 6, 2019.
- Rubin LG, Levin MJ, Ljungman P, et al. 2013 IDSA Clinical Practice Guidelines for Vaccination of the Immunocompromised Host. Clin Infectious Dis. 2014;58(3):e44-e100.
- Pasiarski M, Rolinski J, Grywalska E, et al. Antibody and plasmablast response to 13-valent pneumococcal conjugate vaccine in chronic lymphocytic leukemia patients – preliminary report. PLoS One. 2014;9(12):e114966.
- Centers for Disease Control and Prevention. Who Should Not Get Vaccinated with these Vaccines? https://www.cdc.gov/vaccines/vpd/should-not-vacc.html. Accessed March 22, 2019.
- National Comprehensive Cancer Network. NCCN Guidelines for Patients. Chronic Lymphocytic Leukemia. https://www.nccn.org/patients/guidelines/cll/ Accessed March 6, 2019.
- CLL Society. CLL: Infection Kills! How Can We Prevent It? https://cllsociety.org/2017/06/cll-infection-kills-can-prevent/. Accessed March 22, 2019.
- Patient Education: Chronic lymphocytic leukemia (CLL) in adults (Beyond the Basics). https://www.uptodate.com/contents/chronic-lymphocytic-leukemia-cll-in-adults-beyond-the-basics. Accessed March 22, 2019.