Life After CLL

Life After CLL

Moving Forward as a Chronic Lymphocytic Leukemia Survivor

Chronic lymphocytic leukemia (CLL) is a type of blood cancer. It is the most common type of leukemia. CLL generally affects seniors, with more than 83 percent of survivors older than age 65. Advances in the treatment of CLL have resulted in improved remission rates and quality of life for CLL survivors. The number of CLL survivors who are in remission increases each year. This is a hopeful time for people with CLL. In recent years, new therapies have been approved and other new treatments for CLL are being studied in clinical trials.

Follow-Up Care for CLL

People with CLL should see their primary care doctors and their hematologist-oncologists regularly for follow-up care. At these visits, the doctor will check your health, blood cell counts, and if needed, perform or order other tests to evaluate your treatment progress, as well as to see if there are any signs of relapse. You should also tell your doctor about any changes that you notice. (For example, infections, enlarged lymph nodes, night sweats, etc.)

You should talk with your doctor about how often to have follow-up visits. You can ask your doctor what tests will be needed and find out how often you should have these tests. It is important to keep a record of your cancer treatments, including the drugs and procedures you received and the time period in which you received them, so that your doctor can follow up on specific long-term effects that may be associated with your treatment.

People with CLL should see their primary care doctors and their hematologist-oncologists regularly for follow-up care.

Questions for Your Doctor

Talk with your doctor and ask questions about your follow-up care plan. This will help you to become actively involved in making decisions about your care. Here are some questions you may want to ask your healthcare team:

  • Who should I work with to ensure lifelong follow up?
  • Will I continue to see this health- care team?
  • What information can be provided to my primary doctor about my past treatment and what may be needed in the future?
  • How can I be monitored for long-term and late effects of treatment?

About CLL

Leukemia is the general term for a number of different types of blood cancer. Chronic lymphocytic leukemia is one of the four main types of leukemia. CLL is a type of cancer that begins in the bone marrow. It starts with a change, or mutation, to a lymphocyte, which is a type of white blood cell. This abnormal leukemia cell multiplies uncontrollably.

Over time, leukemia cells can build up in the blood, bone marrow, spleen, and lymph nodes. Doctors do not know what causes most cases of CLL. There is no way to prevent CLL, and you cannot catch CLL from someone else.

How to Care for Yourself as a CLL Survivor

During and after treatment for CLL, it is important that you take care of your physical health, as well as your mental and emotional well-being.

  • Keep all appointments with your doctor.
  • Talk about how you feel with the doctor at each visit.
  • Ask any questions you may have about side effects.
  • People with CLL may have more infections than other people. Follow your doctor’s advice for preventing infection.
  • Eat healthy foods each day. It is OK to eat four or five smaller meals instead of three big ones.
  • Contact your doctor about tiredness, fever, or other symptoms.
  • Do not smoke. People who smoke should get help to quit.
  • Get enough rest and exercise. Talk with your doctor before starting an exercise program.
  • Keep a healthcare file with copies of lab reports and treatment records.
  • Have regular cancer screenings. See your primary care doctor to keep up with other healthcare needs.
  • Talk with family and friends about how you feel. When family and friends know about CLL and its treatment, they may worry less.
  • Seek medical advice if you feel sad or depressed and your mood does not improve over time. For example, if you feel sad or depressed every day for a two-week period, seek help. Depression is an illness. It can and should be treated, even when a person is being treated for CLL. Treatment for depression has benefits for people living with cancer.
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Excerpted with permission from The Leukemia & Lymphoma Society booklet The CLL Guide: Information for Patients and Caregivers. For free information on blood cancers, contact The Leukemia & Lymphoma Society Information Specialists at (800) 955-4572 or visit LLS.org.

This article was published in Coping® with Cancer magazine, March/April 2021.

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