What Is Life Like As a Chronic Lymphocytic Leukemia Survivor?

Most people can survive with chronic lymphocytic leukemia (CLL) for many years. CLL survivors may have an increased risk of infections, getting some other types of cancer, depression, and anxiety.

Chronic lymphocytic leukemia (CLL) is a cancer of the white blood cells (lymphocytes) in the bone marrow in the center of the bones. In CLL, the bone marrow produces abnormal blood cells that grow out of control and get into the bloodstream. 

• CLL makes up about one-third of all leukemias. Older adults are more often affected, with an average age at diagnosis of 70 years.
• CLL is rarely able to be cured but because the cancer progresses slowly, most people can survive with the disease for many years. Some CLL patients will not need to be treated at first, but over time, most people will need treatment. 
• Even if a patient with chronic lymphocytic leukemia has no signs of disease after treatment (is in remission), CLL is likely to come back (recur) at some point. Future treatments depend on what previous treatments were given, the length of time since the last treatment, and the patient’s overall health. 

Considerations for chronic lymphocytic leukemia survivors may include: 

• Increased risk of infections
  • Most people with CLL do not have properly functioning immune systems, which can increase the risk for certain infections
  • Some medications used to treat CLL, such as alemtuzumab (Campath) and many chemotherapy drugs, may also raise the risk of infection
  • Vaccinations, certain medications, or other treatments may be recommended to help prevent or control certain infections
• Talk to your doctor about a survivorship care plan, which includes:
  • A recommended schedule for follow-up exams and tests
  • Suggestions for diet and physical activity
  • Reminders to keep appointments with a primary care provider to monitor general health care 
  • A schedule for other tests that may be needed in the future, such as early detection (screening) tests for other types of cancer or tests to look for long-term health effects from the cancer or its treatment
  • A list of potential late- or long-term side effects from treatment, including what to watch for and when to contact your doctor
• Maintain health insurance and keep copies of all medical records
  • Patients who have had CLL often require life-long treatment
  • Keeping medical records can be important when patients need to see new doctors who are not familiar with a person’s medical history
• Make healthy lifestyle choices
  • While it’s unknown what can reduce the risk of the cancer recurring, a healthy lifestyle may help
    • Exercise regularly
    • Don’t smoke
    • Eat a balanced, nutritious diet
    • Maintain a healthy weight
• Second cancers may occur
  • CLL cancer survivors are at higher risk for getting some other types of cancer
  • It is important to see your doctor regularly for screening 
• Seek emotional support
  • Many cancer patients feel depressed or anxious
  • Seek support from family, friends, support groups, or professional counselors if needed