Oncologist-approved cancer information from the American Society of Clinical Oncology

Leukemia - Chronic Lymphocytic - CLL


Last Updated: July 27, 2011

This section has been reviewed and approved by the Cancer.Net Editorial Board,  11/10

Overview

Leukemia is a cancer of the blood. Leukemia begins when normal blood cells change and grow uncontrollably. Chronic lymphocytic leukemia (CLL) is a cancer of the lymphocytes, a type of white blood cell involved in the body’s immune system. For about half of people with CLL, the disease grows and progresses slowly, and it may take years for symptoms to appear or for treatment to be needed. In fact, some patients may never need treatment for their CLL. The other half of people who develop CLL have a type of CLL that grows more quickly and need treatment sooner.

About lymphocytes

Lymphocytes are made in the bone marrow, the spongy, red tissue in the inner part of the large bones. Lymphocytes are found in the blood, lymph nodes, and spleen. There are three different types of lymphocytes: T cells, B cells, and natural killer (NK) cells. Generally, T cells fight infections by activating other cells in the immune system and by destroying infected cells, B cells make antibodies, and NK cells fight microbial cells and cancer cells.

About CLL

In people with CLL, the abnormal cells crowd other types of cells in the bone marrow, preventing the production of red blood cells (which carry oxygen), other types of white blood cells, and platelets (parts of the blood needed for clotting). This means that people with CLL may be anemic (because they do not have enough red blood cells), more likely to get infections (because they do not have enough of the type of white blood cells called neutrophils that fight bacteria), and bruise or bleed easily (because of a low level of platelets).

There are two general types of CLL, and it is important for doctors to find out whether the disease is caused by the overgrowth of T cells or B cells. The T-cell type of CLL is less common (about 1% of people with CLL have this type) and grows faster than the B-cell type of the disease (more than 95% of people with CLL have the B-cell type).

Learn more about other, rare types of chronic T-cell leukemia and types of B-cell leukemia.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items on Cancer.Net:

Or, choose “Next” (below, right) to continue reading this detailed section.

Find out more about basic cancer terms used in this section.

Statistics

This year, an estimated 14,570 people of all ages (8,520 men and boys and 6,050 women and girls) in the United States will be diagnosed with CLL. CLL is the most common type of leukemia diagnosed in adults. It is estimated that 4,380 deaths (2,660 men and boys and 1,720 women and girls) will occur this year.

The survival rate of people with CLL varies widely according to the stage of the disease (see Staging) and can range from about one year to more than 20 to 30 years. The overall five-year survival rate (percentage of people who survive at least five years after the cancer is detected, excluding those who die from other diseases) of people with CLL is about 80%.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of cancer in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with CLL. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2011.

Medical Illustrations

Adult Leukemia Anatomy

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Adult Leukemia Anatomy

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Risk Factors

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors can influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and communicating them to your doctor may help you make more informed lifestyle and health care choices.

The cause of CLL is unknown. There is no evidence indicating that exposure to radiation, chemicals, or chemotherapy increases a person’s risk of developing CLL. The following factors may raise a person’s risk of developing CLL:

Family history. In some families, more than one relative may develop CLL or some other lymph-related cancer; however, this is uncommon. In order to learn more about families with a history of CLL, there is a registry of such families at the National Cancer Institute.

Age. CLL is most common in older adults, is rare in young adults, and hardly ever develops in children. About 90% of people diagnosed with CLL are older than 50.

Gender. Men develop CLL more often than women.

Ethnicity. B-cell CLL is more common in people of Russian and European descent, and hardly ever develops in people from China, Japan, or Southeast Asian countries. The reason(s) for this geographic difference is not known.

Agent Orange. The U.S. Department of Veterans Affairs lists CLL as a disease associated with exposure to Agent Orange, a chemical used during the Vietnam War.

Symptoms

People with CLL may experience the following symptoms or signs. Sometimes, people with CLL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom or sign on this list, please talk with your doctor.

Often, people are diagnosed with CLL when the doctor finds many white blood cells during a blood test done for other reasons. Also, the immune system of people with CLL do not work well, and can sometimes make abnormal antibodies against their own red blood cells and/or platelets, destroying these cells and causing anemia (low levels of red blood cells) or a low platelet count. These are called autoantibodies. This can happen at any time for someone with CLL and is not necessarily related to the severity of CLL.

  • Swelling of lymph nodes in the neck, under the arms, or in the groin. This is a common symptom that people with CLL usually notice first.

  • Discomfort or fullness in the upper left part of the abdomen, caused when the spleen increases in size

  • Fever and infection

  • Abnormal bleeding

  • Shortness of breath

  • Weight loss

Diagnosis

Doctors use many tests to diagnose cancer and find out more about the disease. Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may also be used. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition

  • The type of cancer suspected

  • Severity of symptoms

  • Previous test results

The following tests may be used to diagnose CLL:

Blood tests. The diagnosis of CLL begins with a complete blood count (CBC; a routine blood test) to measure the number of different types of cells in a sample of a person’s blood. A person may have CLL if the blood contains many white blood cells (called a high white blood cell count). The doctor will also use the blood test to find out which types of white blood cells are increased.

Bone marrow biopsy. In a bone marrow biopsy, a doctor takes a sample of marrow, usually from the back of the hipbone, with a needle. The patient is given medication to numb the area beforehand. The cells from the marrow, along with the cells from the blood, are analyzed by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease).

CLL can usually be diagnosed with blood tests; a bone marrow biopsy is not needed for all patients. For some patients, it may be used to help determine prognosis (chance of recovery) or provide more information about the reasons that other blood counts may be abnormal.

Flow cytometry and cytochemistry. In these tests, cancer cells are treated with chemicals or dyes that provide information about the leukemia and its subtype. CLL cells have distinctive markers (cell surface proteins) on their surface. The pattern of these markers is called the immunophenotype. These tests are used to distinguish CLL from other kinds of leukemia, which can also involve lymphocytes. Both tests can be done from a blood sample.

Imaging tests. CLL is generally found in many parts of the body, even if the disease has been diagnosed early. Therefore, imaging tests to find out if the cancer has spread are not needed for all patients, although they may sometimes be recommended to find out whether particular symptoms may be related to the CLL and to measure how well treatment is working.

  • An x-ray (picture of the inside of the body) may show if cancer is growing in lymph nodes in the chest.

  • A computed tomography (CT or CAT) scan (a three-dimensional picture of the inside of the body) can detect lymph nodes with CLL around the heart, windpipe, lungs, and abdomen. Sometimes, a contrast medium (a special dye) is injected into a patient’s vein to provide better detail. CT scans can also determine if CLL is in other organs, such as the spleen.

Learn more about what to expect when having common tests, procedures, and scans.

Find out more about common terms used during a diagnosis of cancer.

Staging

Staging is a way of describing a cancer, such as where it is located, if or where it has spread, and if it is affecting the functions of other organs in the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis. There are different stage descriptions for different types of cancer.

There is a relationship between the stage of the CLL and the prognosis, with patients in the earlier stages having better long-term survival. Importantly, however, there is a wide range of outcomes even for patients within the same stage, and the stage alone cannot predict the prognosis with certainty for an individual patient.

Below are explanations of commonly used staging and classification systems used by doctors to describe CLL:

Rai staging system (stage 0, I, II, III, or IV)

In this staging system, CLL is divided into different stages from 0 (zero) to IV (four). This staging system classifies the leukemia according to whether a patient has, or does not have, any of the following:

  • Lymphocytosis (high levels of lymphocytes)

  • Hepatomegaly (an enlarged liver)

  • Lymphadenopathy (swollen lymph nodes)

  • Splenomegaly (an enlarged spleen)

  • Anemia (low levels of red blood cells)

  • Thrombocytopenia (low levels of platelets)

This chart summarizes the Rai stages.

Rai Stage

High levels of lymphocytes

Swollen lymph nodes

Enlarged spleen or liver

Anemia

Low levels of platelets

0

Yes

No

No

No

No

I

Yes

Yes

No

No

No

II

Yes

Yes or no

Yes

No

No

III

Yes

Yes or no

Yes or no

Yes

No

IV

Yes

Yes or no

Yes or no

Yes or no

Yes

Chart adapted from the American Society of Hematology, Kay et. al. 2002, vol. 1:193, Table 8 (http://www.asheducationbook.org/cgi/content-nw/full/2002/1/193/T8)

Stage 0: The patient has lymphocytosis (more than 15,000 lymphocytes per cubic millimeter of blood), but no other physical signs or symptoms.

Stage I: The patient has lymphocytosis and swollen lymph nodes. The patient does not have an enlarged liver or spleen, anemia, or low levels of platelets.

Stage II: The patient has lymphocytosis and an enlarged liver or spleen and may or may not have swollen lymph nodes.

Stage III: The patient has lymphocytosis and anemia. The patient may or may not have swollen lymph nodes and an enlarged liver or spleen.

Stage IV: The patient has lymphocytosis and low levels of platelets. The patient may or may not have swollen lymph nodes, an enlarged liver or spleen, or anemia.

If the CLL grows and worsens, the stage may change in an individual patient over time, and these changes vary widely from patient to patient.

Risk group

Sometimes the phrase “risk group” is used to indicate the likelihood that the disease may worsen and require treatment.

Low risk: Rai stage 0

Intermediate risk: Rai stages I and II

High risk: Rai stages III and IV

Binet classification (stage A, B, or C)

European doctors use a different staging system, based on whether the CLL is found in the lymph nodes (in the neck, under the arms, or in the groin area) and whether the patient has low levels of red blood cells or platelets. The stages are called A, B, and C.

Binet stage

Number of lymph node areas

Anemia

Low levels of platelets

A

Less than 3

No

No

B

3 or more

No

No

C

Any number

Yes (or low platelets)

Yes (or anemia)

Chart adapted from the American Society of Hematology, Kay et. al.2002, vol. 1:193, Table 8 (http://www.asheducationbook.org/cgi/content-nw/full/2002/1/193/T8)

Stage A: The patient does not have anemia or low levels of platelets. The cancer can be felt in fewer than three areas of lymph nodes (Rai stages 0, I, and II).

Stage B: The patient does not have anemia or low levels of platelets. The cancer is in three or more areas of lymph nodes (Rai stages I and II).

Stage C: The patient has anemia and/or low levels of platelets. The cancer is in any number of lymph nodes (Rai stages III and IV).

Recurrent CLL

Recurrent CLL is CLL that comes back after treatment.

Treatment

The treatment of CLL depends on the patient’s stage, risk status, and overall health. In many cases, a team of doctors will work with the patient to determine the best treatment plan.

Because CLL often develops slowly, many people may not need treatment right away, and some may never need treatment at all. Although the current standard treatments can be highly effective, none can completely get rid of CLL, and patients are not cured of the disease with treatment. The goal of treatment is long-term remission, described below.

This section outlines treatments that are the standard of care (the best treatments available) for this specific type of cancer. Patients are also encouraged to consider clinical trials as a treatment option when making treatment plan decisions. A clinical trial is a research study to test a new treatment to prove it is safe, effective, and possibly better than standard treatment. Your doctor can help you review all treatment options. For more information, see the Clinical Trials section.

Descriptions of the most common treatment options for CLL are listed below.

Watch and wait, for early-stage CLL

Patients with symptoms and/or large amounts of CLL in the blood, lymph nodes, or spleen need treatment shortly after the diagnosis. For other patients, however, it is possible and recommended for doctors to monitor the patient without active treatment. During this time, the patient’s blood counts are monitored and physical examinations are performed on a regular basis. If the CLL shows signs of worsening, active treatment would then begin. Many research studies have shown that no harm comes from the watch-and-wait approach (also called active surveillance), as compared with immediate treatment of patients with early-stage CLL. Some patients don’t develop symptoms for years, or even decades, and will not need any treatment.

Treatment is recommended for patients who develop symptoms and/or worsening blood counts. These might include increased fatigue, night sweats, enlarged lymph nodes, or lowered red blood cell or platelet counts. People with CLL are encouraged to talk with their doctor about whether their symptoms need treatment, balancing the benefits of treatment with the side effects. Find out more about starting cancer treatment.

Chemotherapy

Chemotherapy is the use of drugs to kill cancer cells. In systemic chemotherapy, the drugs travel through the bloodstream to cancer cells throughout the body. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication, or a hematologist, a doctor who specializes in treating blood disorders. Some people may receive chemotherapy in their doctor's office or outpatient clinic; others may go to the hospital. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a specific time.

When treatment begins, doctors may use a number of different drugs depending on the stage of the disease and the person’s age and health. Chemotherapy may be given in pill form and taken orally (by mouth), by intravenous (IV; through a vein) infusion, or by subcutaneous (SQ) injection (an injection under the skin). Sometimes, a doctor may use a combination of drugs, but a combination of drugs is not always better than a single drug.

One of the first drugs people with CLL may receive is called fludarabine (Fludara), a type of drug called a nucleoside analogue. Similar drugs called pentostatin (Nipent) and cladribine (Leustatin) are also sometimes used to treat patients with CLL, although fludarabine is used most commonly.

Chlorambucil (multiple brand names) and cyclophosphamide (Cytoxan, Clafen, Neosar) belong to a class of drugs called alkylating agents. Both drugs can be given orally, while cyclophosphamide can also be given intravenously. Cyclophosphamide may be given alone or with prednisone (multiple brand names), a type of oral corticosteroid.

In the past, patients were initially treated with either fludarabine alone or chlorambucil/prednisone, switching to the other regimen if the initial treatment did not work well. Today, these drugs are often given together in the following combinations:

  • Rituximab (Rituxan) (see below) and fludarabine

  • Cyclophosphamide and fludarabine

  • Cyclophosphamide, fludarabine and rituximab

  • Pentostatin, cyclophosphamide, and rituximab

  • Bendamustine (Treanda) and rituximab (a more recent combination)

The choice of treatment often depends on the patient’s age, general health, and the interest in and availability of clinical trials. Other drugs, including alvocidib (sometimes called flavopiridol), and lenalidomide (Revlimid) are being researched for CLL.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Targeted therapy

Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. Rituximab is a type of targeted therapy called a monoclonal antibody that is given intravenously and binds to a protein on the surface of B cells, killing some of the CLL cells and possible increasing the effect of chemotherapy. As mentioned above, rituximab is currently being researched in combination with chemotherapy.

Alemtuzumab (Campath) is another monoclonal antibody that has been approved by the U.S. Food and Drug Administration (FDA) as a treatment for advanced CLL when other treatments no longer work. It can be used for both T-cell and B-cell CLL. This antibody can be given either intravenously or as a subcutaneous injection.

Side effects from chemotherapy and targeted therapy

Chemotherapy for CLL may cause nausea and vomiting, although nausea and vomiting can generally be prevented with drugs. Doctors will also closely watch for decreases in normal blood counts, which can increase a person’s risk of infection, bleeding, and fatigue. To manage these side effects, some patients need transfusions of red blood cells and platelets or antibiotics to treat infections.

Decreases in blood counts after chemotherapy are sometimes more severe for people with CLL than for people with other types of cancer because of the CLL cells in the bone marrow. Patients should talk with their doctors about the symptoms they might experience, how they could be prevented, and how closely they should be monitored.

Sometimes, subcutaneous injections of white blood cell growth factors such as filgrastim (Neupogen), sargramostim (Leukine, Prokine), or pegylated filgrastim (Neulasta) are used to help the bone marrow make normal white blood cells. Injections of epoetin (Epogen, Eprex, Procrit) or darbepoetin (Aranesp) may be given to treat anemia caused by chemotherapy. However, these drugs also have risks, and it is important for you and your doctor to carefully consider the risks and the benefits. Read more about ASCO’s recommendations for when white blood cell growth factors and epoetin and darbepoetin treatment should be used.

Often, a person’s first treatments with rituximab and alemtuzumab cause fevers and chills, which usually go away after the first few treatments.

One of the side effects of both CLL and its treatment is the risk of developing a bacterial, viral, or fungal infection. Doctors may call these opportunistic infections. In particular, patients with CLL often develop infections with herpes viruses, either as cold sores or as herpes zoster (shingles). Herpes zoster can become quite painful and turn into a severe infection. Patients should tell their doctors right away if they notice a rash or skin problems that look like hives and are grouped together in a band across the chest or abdomen, or down the legs, arms, or face. These infections can be treated with antiviral drugs, and treatment works better when started sooner.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. A radiation therapy regimen usually consists of a specific number of treatments given over a specific time. Radiation therapy is not often used to treat CLL because the disease is located throughout the body. However, radiation therapy can be very helpful to shrink an enlarged spleen or swollen lymph nodes and relieve symptoms.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about radiation therapy.

Remission

The goal of treatment is to relieve any symptoms from CLL and to reduce the amount of remaining CLL as much as possible. A complete remission (CR) is when the doctor cannot find any evidence of cancer remaining after repeated testing. A partial remission (PR) is when there is some cancer remaining. A PR is most common for people with CLL who receive the current standard treatments. With a PR, patients can feel quite well with normal blood counts, have no swollen lymph nodes or spleen, but still have large amounts of CLL in the bone marrow.

The goal of newer, more intensive treatments is to destroy more cancer cells in the hope of increasing a person’s survival. In the future, the definition of a CR in CLL is likely to change with advances in technology. For example, some sensitive tests can find very small levels of the abnormal DNA changes specific to CLL. This measurement is called a molecular remission.

Refractory CLL and recurrent CLL

If the leukemia has not responded to the initial treatment, the disease is called refractory CLL. Because CLL cannot be cured using current standard treatments, CLL usually comes back after treatment, which is called recurrent CLL. How long it takes for treatment to work can vary from weeks to many years, and how fast CLL grows can also vary considerably. Finding a recurrence does not mean that treatment is needed immediately. In fact, the watch-and-wait approach (see above) is usually recommended, with active treatment only if the disease causes symptoms again. If CLL becomes resistant to one drug, meaning the drug no longer works, treatment with other types of drugs is recommended.

Some symptoms can be treated in other ways, such radiation therapy or a splenectomy (surgery to remove an enlarged spleen). Some patients who have infections that keep coming back may benefit from immunoglobulin given by IV each month because patients with CLL have fewer amounts of normal antibodies. Patients who make antibodies that destroy their own blood cells (see Symptoms) often need high doses of drugs called corticosteroids to stop the body from making these antibodies.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which diseased bone marrow is replaced by highly specialized cells, called hematopoietic stem cells. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because blood stem cells are typically what is being transplanted, not the actual bone marrow tissue.

There are two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO is the type of transplant typically used for treating CLL.

In an ALLO transplant, stem cells are obtained from a donor whose tissue matches the patient’s on a genetic level; this testing is called HLA-typing. Most often, a patient’s brother or sister serves as the donor, although unrelated donors can serve as the donor too. Millions of people worldwide have volunteered to donate stem cells for patients who do not have matched family members; your health care team will search a computer registry to look for a match. In addition, a donation of stem cells derived from umbilical cord blood is sometimes considered if family donors are not available. An ALLO transplantation may be recommended for certain younger patients with CLL that has not responded to treatment with chemotherapy and immunotherapy who are in otherwise good overall health.

In an AUTO transplant, the patient’s own stem cells are used. The stem cells are obtained from the patient when he or she is in remission from previous treatment. The stem cells are then frozen until they are needed, usually after the high-dose treatment (explained below) is completed. AUTO transplants are usually not done for patients with CLL.

In both types, the goal of transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and have replacement blood stem cells create healthy bone marrow. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many cancer cells as possible. This also destroys the patient’s bone marrow tissue and suppresses the patient’s immune system so that, in an ALLO transplant, the donor cells are not rejected by the body. After the high-dose treatment is given, blood stem cells are infused into the patient’s vein to replace the bone marrow and restore normal blood counts from donor cells. Sometimes, ALLO transplants can also be performed after giving lower doses of chemotherapy and/or radiation therapy that are still sufficient to suppress the immune system and allow growth of the donor cells. These transplants, sometimes termed “mini-transplants” or “reduced intensity transplants” have less immediate side effects, allowing the procedure to be used for older patients.

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of cancer, results of any previous treatment, and patient’s age and general health.

For both ALLO and AUTO transplant types, the replacement cells engraft (begin to make new blood cells) and turn into healthy, blood-producing tissue in 10 days to three weeks. Destroying the patient’s own marrow reduces the body’s natural defenses, temporarily leaving the patient at an increased risk of infection. Until the patient’s immune system is back to normal, patients may need antibiotics and blood transfusions.

In an ALLO transplant, another major risk is that the donor’s cells will recognize the patient’s body as foreign, causing graft-versus-host disease (GVHD). GVHD may be a serious complication of allogeneic transplants and can be fatal. Other side effects may include liver problems, diarrhea, infections, and rashes. However, GVHD can also be a benefit, in that the donor cells can recognize the cancer cells as foreign and destroy these cells, a mechanism that is one of the major reasons why ALLO transplantation generally works so well over the long term. The risk of GVHD can be reduced with exact HLA-type matching and the use of preventive drugs.

Learn more about bone marrow and stem cell transplantation.

Find out more about common terms used during cancer treatment.

Clinical Trials Resources

Doctors and scientists are always looking for better ways to treat patients with CLL. A clinical trial is a way to test a new treatment to prove that it is safe, effective, and possibly better than a standard treatment. The clinical trial may be evaluating a new drug, a new combination of existing treatments, a new approach to radiation therapy or surgery, or a new method of treatment or prevention. Patients who participate in clinical trials are among the first to receive new treatments, such as new chemotherapy before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that finding new drugs and other therapies is the only way to make progress in treating CLL. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with CLL.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill”. The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find clinical trials.

For specific topics being studied for CLL, learn more in the Current Research section.

Side Effects

Cancer and its treatment can cause a variety of side effects. However, doctors have made major strides in recent years in reducing pain, nausea and vomiting, and other physical side effects of cancer treatments. Many treatments used today are less intensive but as effective as treatments used in the past. Doctors also have many ways to provide relief to patients when such side effects do occur.

Fear of treatment side effects is common after a diagnosis of cancer, but it may be helpful to know that preventing and controlling side effects is a major focus of your health care team. Before treatment begins, talk with your doctor about possible side effects of the specific treatments you will be receiving. The specific side effects that can occur depend on a variety of factors, including the type of cancer, its location, the individual treatment plan (including the length and dosage of treatment), and the person’s overall health.

In CLL, a particular concern is that, with treatment suppressing the body’s immune system, this may lead to an increase in opportunistic infections (see Treatment). Ask your doctor which side effects are most likely to happen (and which are not), when side effects are likely to occur, and how they will be addressed by the health care team if they do happen. Also, be sure to communicate with the doctor about side effects you experience during and after treatment.

Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Learn more about the importance of addressing such needs, including concerns about managing the cost of your cancer care.

Learn more about late effects or long-term side effects by reading the After Treatment section or talking with your doctor.

After Treatment

After treatment for CLL ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

People should receive regular follow-up examinations for several years to watch for any signs of recurrence or late effects (side effects that occur years after treatment) of chemotherapy. People with CLL also have a higher risk of developing other cancers (called secondary cancers), particularly lung, colon, or skin cancers, and they should tell their doctors if they notice new symptoms or worsening skin problems or moles.

People recovering from CLL are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about healthy living after cancer

Find out more about common terms used after cancer treatment is complete.

Current Research

Research for CLL is ongoing. The following advances may still be under investigation in clinical trials and may not be approved or available at this time. Always discuss all diagnostic and treatment options with your doctor. Most cancer centers are actively involved in clinical trials aimed at increasing the rate of cure from CLL.

New drugs and drug combinations. Researchers are working to find new drugs for CLL. These types of studies are often first used for patients when the standard treatment no longer works. Different combinations of chemotherapy and targeted therapy are also being studied as a way to increase the likelihood that a patient will have a CR and live longer.

Stem cell/bone marrow transplantation. Researchers are looking at decreasing the side effects of stem cell transplantation by using reduced intensity transplantation, which may mean more patients could have a stem cell transplantation. Also being studied in clinical trials are different approaches to ALLO transplantation for patients with CLL when chemotherapy isn’t working well.

Genetics. Finding genetic changes specific to CLL cells is also being researched, which may help predict how well treatment will work, determine the best treatment, and provide information about the cause of the disease. Examples include measuring the immunoglobulin mutations (changes) of the CLL cells, determining the chromosomal abnormalities found in the CLL cells, and finding a protein called Zap70 on the surface of the CLL cells. Some research suggests that these markers can predict the likelihood that the disease may worsen faster. However, there are many differences in these genetic changes among patients, and it is too early to use these tests to make decisions about when to begin treatment and the type of treatment to use.

Active surveillance and early treatment. Clinical trials for patients with early-stage CLL are underway to find out if early treatment is better than the watch-and-wait approach.

Looking for More about Current Research?

If you would like additional information about the latest areas of research regarding leukemia, explore these related items:

Or, choose “Next” (below, right) to continue reading this detailed section.

Questions to Ask the Doctor

Regular communication with your doctor is important in making informed decisions about your health care. Consider asking the following questions of your doctor:

  • What is my diagnosis?

  • Can you explain my pathology report (laboratory test results) to me?

  • What stage or risk group is the CLL?

  • Can you recommend a leukemia specialist?

  • Where is the best place for me to be treated?

  • What are my options for treatment?

  • What is the goal of each treatment option?

  • What clinical trials are open to me?

  • What treatment do you recommend? Why?

  • Do I need to start treatment right away? If not, please explain why treatment doesn’t begin as soon as possible.

  • What are the possible side effects of this treatment, both in the short term and long term?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • If I’m worried about managing the costs related to my cancer care, who can help me with these concerns?

  • Will this treatment affect my fertility? If so, can you recommend a fertility specialist before treatment begins?

  • What follow-up tests will I need, and how often will I need them?

  • What support services are available to me? To my family?

Patient Information Resources

In addition to Cancer.Net, there are other sources of information about this type of cancer available online. Cancer.Net maintains a list of national, not-for-profit organizations that may be helpful in finding additional information, services, and support. As always, be sure to talk with your doctor about questions you may have about information you find about this disease.

View organizations that offer information on this specific type of cancer.