Chronic lymphocytic leukemia
Date Updated: 08/10/2021
Chronic lymphocytic leukemia (CLL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.
The term "chronic" in chronic lymphocytic leukemia comes from the fact that this leukemia typically progresses more slowly than other types of leukemia. The term "lymphocytic" in chronic lymphocytic leukemia comes from the cells affected by the disease — a group of white blood cells called lymphocytes, which help your body fight infection.
Chronic lymphocytic leukemia most commonly affects older adults. There are treatments to help control the disease.
Many people with chronic lymphocytic leukemia have no symptoms at first. Signs and symptoms might develop as the cancer progresses. They might include:
- Enlarged, but painless, lymph nodes
- Pain in the upper left portion of the abdomen, which may be caused by an enlarged spleen
- Night sweats
- Weight loss
- Frequent infections
When to see a doctor
Make an appointment with your doctor if you have any persistent signs and symptoms that worry you.
Doctors aren't certain what starts the process that causes chronic lymphocytic leukemia. What's known is that something happens to cause changes (mutations) in the DNA of blood-producing cells. A cell's DNA contains the instructions that tell the cell what to do. The changes tell the blood cells to produce abnormal, ineffective lymphocytes.
Beyond being ineffective, these abnormal lymphocytes continue to live and multiply when healthy lymphocytes would die. The abnormal lymphocytes accumulate in the blood and certain organs, where they cause complications. They may crowd healthy cells out of the bone marrow and interfere with blood cell production.
Doctors and researchers are working to understand the exact mechanism that causes chronic lymphocytic leukemia.
Factors that may increase the risk of chronic lymphocytic leukemia include:
- Your age. This disease occurs most often in older adults.
- Your race. White people are more likely to develop chronic lymphocytic leukemia than are people of other races.
- Family history of blood and bone marrow cancers. A family history of chronic lymphocytic leukemia or other blood and bone marrow cancers may increase your risk.
- Exposure to chemicals. Certain herbicides and insecticides, including Agent Orange used during the Vietnam War, have been linked to an increased risk of chronic lymphocytic leukemia.
- A condition that causes excess lymphocytes. Monoclonal B-cell lymphocytosis (MBL) causes an increased number of one type of lymphocyte (B cells) in the blood. For a small number of people with MBL, the condition may develop into chronic lymphocytic leukemia. If you have MBL and also have a family history of chronic lymphocytic leukemia, you may have a higher risk of developing cancer.
Chronic lymphocytic leukemia may cause complications such as:
- Frequent infections. If you have chronic lymphocytic leukemia, you may experience frequent infections that can be serious. Sometimes infections happen because your blood doesn't have enough germ-fighting antibodies (immunoglobulins). Your doctor might recommend regular immunoglobulin infusions.
- A switch to a more aggressive form of cancer. A small number of people with chronic lymphocytic leukemia may develop a more aggressive form of cancer called diffuse large B-cell lymphoma. Doctors sometimes refer to this as Richter's syndrome.
- Increased risk of other cancers. People with chronic lymphocytic leukemia have an increased risk of other types of cancer, including skin cancer and cancers of the lung and the digestive tract.
- Immune system problems. A small number of people with chronic lymphocytic leukemia may develop an immune system problem that causes the disease-fighting cells of the immune system to mistakenly attack the red blood cells (autoimmune hemolytic anemia) or the platelets (autoimmune thrombocytopenia).
Tests and procedures used to diagnose chronic lymphocytic leukemia include blood tests designed to:
- Count the number of cells in a blood sample. A complete blood count may be used to count the number of lymphocytes in a blood sample. A high number of B cells, one type of lymphocyte, may indicate chronic lymphocytic leukemia.
Determine the type of lymphocytes involved. A test called flow cytometry or immunophenotyping helps determine whether an increased number of lymphocytes is due to chronic lymphocytic leukemia, a different blood disorder or your body's reaction to another process, such as infection.
If chronic lymphocytic leukemia is present, flow cytometry may also help analyze the leukemia cells for characteristics that help predict how aggressive the cells are.
- Analyze lymphocytes for genetic changes. A test called fluorescence in situ hybridization (FISH) examines the chromosomes inside the cancerous lymphocytes to look for changes. Doctors sometimes use this information to determine your prognosis and help choose a treatment.
In some cases, your doctor may order additional tests and procedures to aid in diagnosis, such as:
- Tests of your leukemia cells that look for characteristics that could affect your prognosis
- Bone marrow biopsy and aspiration
- Imaging tests, such as computerized tomography (CT) and positron emission tomography (PET)
Once a diagnosis is confirmed, your doctor uses the information about your cancer to determine the stage of your chronic lymphocytic leukemia. The stage tells your doctor how aggressive your cancer is and how likely it is to get worse quickly.
Chronic lymphocytic leukemia stages can use letters or numbers. In general, the earliest stages of disease don't need to be treated right away. People with cancer in the later stages may consider beginning treatment immediately.
Your treatment options for chronic lymphocytic leukemia depend on several factors, such as the stage of your cancer, whether you're experiencing signs and symptoms, your overall health, and your preferences.
Treatment may not be needed right away
If your chronic lymphocytic leukemia doesn't cause symptoms and doesn't show signs of getting worse, you may not need treatment right away. Studies have shown that early treatment doesn't extend lives for people with early-stage chronic lymphocytic leukemia.
Rather than put you through the potential side effects and complications of treatment before you need it, doctors carefully monitor your condition and reserve treatment for when your leukemia progresses.
Your doctor will plan a checkup schedule for you. You may meet with your doctor and have your blood tested every few months to monitor your condition.
Treatments for intermediate and advanced stages
If your doctor determines that your chronic lymphocytic leukemia requires treatment, your options may include:
- Chemotherapy. Chemotherapy is a drug treatment that kills quickly growing cells, including cancer cells. Chemotherapy treatments can be administered through a vein or taken in pill form. Depending on your situation, your doctor may use a single chemotherapy drug or you may receive a combination of drugs.
- Targeted drug therapy. Targeted drug treatments focus on specific abnormalities present within cancer cells. By blocking these abnormalities, targeted drug treatments can cause cancer cells to die.
- Immunotherapy. Immunotherapy uses your immune system to fight cancer. Your body's disease-fighting immune system may not attack your cancer because the cancer cells produce proteins that help them hide from the immune system cells. Immunotherapy works by interfering with that process.
Bone marrow transplant. A bone marrow transplant, also known as a stem cell transplant, uses strong chemotherapy drugs to kill the stem cells in your bone marrow that are creating diseased lymphocytes. Then healthy adult blood stem cells from a donor are infused into your blood, where they travel to your bone marrow and begin making healthy blood cells.
As new and more-effective drug combinations have been developed, bone marrow transplant has become less common in treating chronic lymphocytic leukemia. Still, in certain situations this may be a treatment option.
Treatments may be used alone or in combination with each other.
Your doctor will meet with you regularly to monitor any complications you may experience. Supportive care measures may help prevent or relieve any signs or symptoms.
Supportive care may include:
- Cancer screening. Your doctor will evaluate your risk of other types of cancer and may recommend screening to look for signs of other cancers.
- Vaccinations to prevent infections. Your doctor may recommend certain vaccinations to reduce your risk of infections, such as pneumonia and influenza.
- Monitoring for other health problems. Your doctor may recommend regular checkups to monitor your health during and after treatment for chronic lymphocytic leukemia.
No alternative treatments have been proved to cure chronic lymphocytic leukemia.
Alternative treatments for coping with fatigue
Some alternative medicine therapies may help you cope with fatigue, which is commonly experienced by people with chronic lymphocytic leukemia. Your doctor can treat fatigue by controlling the underlying causes, but often medications alone aren't enough. You may find relief through alternative therapies, such as:
Talk to your doctor about your options. Together you can devise a plan to help you cope with fatigue.
Coping and support
Chronic lymphocytic leukemia is typically a slow-growing cancer that may not require treatment. While some people may refer to this as a "good" type of cancer, it doesn't really make receiving a cancer diagnosis any easier.
While you may initially be shocked and anxious about your diagnosis, you'll eventually find your own way of coping with chronic lymphocytic leukemia. Until then, try to:
- Find out enough about your cancer to make decisions about your care. Write down questions to ask your doctor before each appointment and look for information in your local library and on the internet. Good sources include the National Cancer Institute, the American Cancer Society, and the Leukemia & Lymphoma Society.
- Turn to family and friends for support. Stay connected to family and friends for support. It can be tough to talk about your diagnosis, and you'll likely get a range of reactions when you share the news. But talking about your diagnosis and passing along information about your cancer can help. So can the offers of help that often result.
- Connect with other cancer survivors. Consider joining a support group, either in your community or on the internet. A support group of people with the same diagnosis can be a source of useful information, practical tips and encouragement.
- Explore ways to cope with the nagging, chronic nature of the disease. If you have chronic lymphocytic leukemia, you'll likely face ongoing tests and ongoing worries about your white blood cell count. Try to find an activity that helps you relax, whether it's yoga, exercise or gardening. Talk to a counselor, therapist or social worker if you need help dealing with the emotional challenges of this chronic disease.
Preparing for an appointment
If you have any signs or symptoms that worry you, start by making an appointment with your family doctor. If your doctor determines that you may have chronic lymphocytic leukemia, you may be referred to a doctor who specializes in diseases of the blood and bone marrow (hematologist).
Because appointments can be brief, and because there's often a lot of information to discuss, it's a good idea to be prepared. Here's some information to help you get ready and know what to expect from your doctor.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, ask if there's anything you need to do in advance, such as restrict your diet.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins or supplements that you're taking.
- Take a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may recall something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For chronic lymphocytic leukemia, some basic questions include:
- What do my test results mean?
- Do I need treatment right away?
- If I don't begin treatment right now, will that limit my treatment options in the future?
- Should I undergo additional tests?
- What are my treatment options?
- What are the side effects associated with each treatment?
- Is there one treatment that's strongly recommended for someone with my diagnosis?
- How will treatment affect my daily life?
- I have other health conditions. How can I best manage them together?
- Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions as they occur to you during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow time to cover other points you want to address. Your doctor may ask:
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?