Many people with chronic lymphocytic leukemia have no symptoms. Those who do develop signs and symptoms may experience:

• Enlarged, but painless, lymph nodes
• Fatigue
• Fever
• Night sweats
• Weight loss
• Frequent infections

When to see a doctor
Make an appointment with your doctor if you're concerned about any of your signs and symptoms.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

Doctors aren't certain what starts the process that causes chronic lymphocytic leukemia. Doctors know that something happens in order to cause a genetic mutation in the DNA of blood-producing cells. This mutation causes the blood cells to produce abnormal, ineffective lymphocytes — one type of white blood cell that helps your body fight infection.

Beyond being ineffective, these abnormal lymphocytes continue to live, when other cells would die. The abnormal lymphocytes begin accumulating in the blood and certain organs, where they cause complications. They may crowd healthy cells out of the bone marrow and interfere with normal blood cell production.

Doctors and researchers are working to understand the exact mechanism that causes chronic lymphocytic leukemia.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

Factors that may increase the risk of chronic lymphocytic leukemia include:

• Your age. Most people diagnosed with chronic lymphocytic leukemia are over 50.
• Your sex. Men are more likely than women to develop chronic lymphocytic leukemia.
• Your race. Whites 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.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

Chronic lymphocytic leukemia may cause complications such as:

• 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 switch as Richter's syndrome.
• Frequent infections. People with chronic lymphocytic leukemia may experience frequent infections. In most cases, these infections are common infections of the upper and lower respiratory tract. But sometimes more serious infections can develop.
• Increased risk of other cancers. People with chronic lymphocytic leukemia have an increased risk of other types of cancer, including Kaposi's sarcoma, melanoma and cancers of the bladder, lung, stomach and throat.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

If it's thought that you may have chronic lymphocytic leukemia, you're likely to start by first seeing your family doctor or a general practitioner. However, in some cases when you call to set up an appointment, you may be referred immediately 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 ground to cover, it's a good idea to be well prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.

What you can do

• Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to 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, as well as any vitamins or supplements, that you're taking.
• Take a family member or friend along, if possible. Sometimes it can be difficult to soak up all the information provided during an appointment. Someone who accompanies you may remember 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 will 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 to ask your doctor 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?
• Are there any brochures or other printed material that I can take home with me? What Web sites do you recommend?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment whenever you don't understand something.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

Blood tests
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 abnormalities. A test called fluorescence in situ hybridization (FISH) examines the chromosomes inside the abnormal lymphocytes to look for abnormalities. Doctors sometimes use this information to determine your prognosis and help choose a treatment.

Other tests
In some cases your doctor may order additional tests and procedures to aid in diagnosis, such as:

• Bone marrow biopsy and aspiration
• Computerized tomography (CT)

Staging
Once a diagnosis is confirmed, your doctor determines the extent (stage) of your chronic lymphocytic leukemia. Two different staging systems are used. Each assigns a stage — early, intermediate or advanced — that indicates the progression of a person's chronic lymphocytic leukemia. These levels are used to determine your treatment options.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

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 necessary in early stages
People with early-stage chronic lymphocytic leukemia typically don't receive treatment, though clinical trials are evaluating whether early treatment may be helpful. 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. Doctors call this watchful waiting. Waiting doesn't make future treatments less effective.

About one out of every three people who have chronic lymphocytic leukemia diagnosed at the earliest stages will never need treatment.

Your doctor will devise 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 your chronic lymphocytic leukemia is progressing or is in the intermediate or advanced stages, your treatment options may include:

• Chemotherapy. Chemotherapy is a drug treatment that kills cancer cells. Chemotherapy treatments can be given through a vein in your arm 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. Side effects depend on what chemotherapy drugs are used. Common side effects include fatigue, low blood cell counts and a risk of frequent infections.
• Targeted drug therapy. Targeted drugs are designed to take advantage of the specific vulnerabilities of your cancer cells. Chronic lymphocytic leukemia cells have a variety of proteins on their surfaces. Targeted therapy drugs are designed to bind to a specific protein as a way to target and kill leukemia cells. Two targeted therapy drugs routinely used in treating chronic lymphocytic leukemia are rituximab (Rituxan), which is used in combination with chemotherapy drugs, and alemtuzumab (Campath), which is used alone or in combination with other drugs. Side effects of these drugs include fever, chills and infections.
• Bone marrow stem cell transplant. Bone marrow stem cell transplants use strong chemotherapy drugs to kill the stem cells in your bone marrow that are creating diseased lymphocytes. Then healthy adult blood stem cells are infused into your blood, where they travel to your bone marrow and begin making healthy blood cells. A "mini" bone marrow stem cell transplant is similar to a standard stem cell transplant, but it uses lower doses of chemotherapy drugs. Bone marrow stem cells may be a treatment option for people who aren't helped by other treatments. For certain people with very aggressive chronic lymphocytic leukemia, however, bone marrow stem cell transplant is an important treatment option.

Clinical trials
Clinical trials are studies to test new treatments and new ways of using existing treatments. While they give people with chronic lymphocytic leukemia a chance to try the latest treatments, clinical trials don't guarantee a cure. Ask your doctor whether any clinical trials are available to you. Examples of treatments being studied in clinical trials include:

• Early treatment for people with high-risk chronic lymphocytic leukemia. Some people with chronic lymphocytic leukemia will never need treatment. Others may experience a highly aggressive disease that requires treatment soon after diagnosis and that may lead to a shortened life. Doctors are using a variety of prognostic tests to gauge a person's risk of aggressive chronic lymphocytic leukemia. Although the standard approach to treatment for people with early-stage chronic lymphocytic leukemia is watchful waiting, clinical trials are evaluating whether early treatment with more-modern therapies may be beneficial for people with tests that indicate they will experience a more aggressive chronic lymphocytic leukemia.
• New combinations of existing drugs. Researchers are also studying new combinations of chemotherapy drugs. Because many people with chronic lymphocytic leukemia are older and may have other health problems that prevent them from undergoing standard chemotherapy, doctors hope combinations involving drugs with fewer side effects may prove useful.
• A drug similar to thalidomide. The drug thalidomide became infamous for causing birth defects in babies whose mothers took the drug during pregnancy. Later it was discovered that thalidomide was helpful in treating cancers. This led to the creation of drugs that work similarly. Lenalidomide (Revlimid) is approved for treating other blood and bone marrow cancers, and doctors are studying its use in chronic lymphocytic leukemia.
• Other new drugs. Many other drugs are being tested as treatments for people with chronic lymphocytic leukemia, including drugs that have proved useful in treating other types of cancer.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

You can take steps to keep your body healthy if you've been diagnosed with chronic lymphocytic leukemia. Try to:

• Do what you can to avoid infections. People with chronic lymphocytic leukemia are prone to frequent infections. Take steps to keep yourself healthy. Eat a healthy diet with plenty of fruits and vegetables. Get enough sleep so that you wake feeling rested. Exercise most days of the week. Do your best to avoid people who are sick. Wash your hands frequently and thoroughly to help keep germs away.
• Reduce your risk of second cancers. People with chronic lymphocytic leukemia have a risk of second cancers. Lifestyle changes may help reduce your risk, such as not smoking, drinking alcohol in moderation, eating a healthy plant-based diet and using sunscreen when you're outside.
• Go to all of your appointments. Frequent blood tests to see if your cancer has progressed can wear on you. Each time you go for your test, you may experience anxiety that your cancer is worsening. Don't let this stop you from going to all of your appointments. Instead, expect that you'll have some fear and plan for it. Find relaxing activities to occupy your mind while waiting for test results. For instance, exercise, read, or spend time with friends and family.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

No alternative treatments have been found to cure chronic lymphocytic leukemia. But alternative medicine may help you cope with the symptoms of cancer and the side effects of treatment.

People with chronic lymphocytic leukemia frequently experience fatigue. 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:

• Exercise
• Meditation
• Relaxation techniques
• Yoga

Talk to your doctor about your options. Together you can devise a plan to help you cope with fatigue.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.

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 all you can about chronic lymphocytic leukemia. Write down questions you want 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.
• Connect with other cancer survivors. A support group of people with the same diagnosis can be a source of useful information, practical tips and genuine encouragement. Ask your health care team about support groups in your area. Or go online. The American Cancer Society and The Leukemia & Lymphoma Society both host online message boards for cancer survivors.
• Lean on friends and family. 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 can be helpful. So can the practical help that often results. You'll likely get many offers to help. Plan ahead and think of ways you'd like your friends and family to help. For instance, ask someone to drive you to an appointment, help with chores or just listen when you want to talk.
• 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 some activities that help you relax, whether it's yoga, exercise or gardening. Talk to a counselor, therapist or oncology social worker if you need help dealing with the emotional challenge of this chronic disease.

©1998-2009 Mayo Foundation for Medical Education and Research (MFMER). Terms of use.