Leukemia - Chronic Lymphocytic - CLL

ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with chronic lymphocytic leukemia (CLL) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.

How many people are diagnosed with CLL?

CLL makes up 25% of all new leukemia cases, mainly in adults. CLL is the most common type of leukemia in adults older than 19, accounting for 38% of all leukemia diagnoses. In 2023, an estimated 18,740 people of all ages (12,130 men and boys and 6,610 women and girls) in the United States will be diagnosed with CLL. While it can occur at any age, the average age at diagnosis is around 70. CLL is uncommon in people younger than 40 and is very rare in children.

It is estimated that 4,490 deaths (2,830 men and 1,660 women) from this disease will occur in the United States in 2023.

What is the survival rate for CLL?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from CLL. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with CLL are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for people with CLL are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate for people age 20 and older with CLL is 88%.

The survival rates for CLL vary based on several factors. These include the stage of cancer, a person’s age and general health, and how well the treatment plan works.

Experts measure relative survival rate statistics for CLL every 5 years. This means the estimate may not reflect the results of advancements in how CLL is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics .

Statistics adapted from the American Cancer Society's (ACS) publication Cancer Facts & Figures 2023 and the ACS website. (Sources accessed February 2023.)

The next section in this guide is Medical Illustrations . It offers drawings of body parts often affected by CLL. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will find out more about the factors that increase the chance of developing CLL. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often 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. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices. The cause of CLL is unknown. There is no evidence that exposure to radiation, chemicals, or chemotherapy increases a person’s risk of developing CLL. However, the following factors may raise a person’s risk of developing CLL:

• Family history. Although it is uncommon, having more than 1 close relative with CLL or some other lymph-related cancer may be linked with an increased risk of CLL. People with a first-degree relative with CLL, such as a parent, sibling, or child, are 2 to 4 times more likely to develop the disease. In order to learn more about families with a history of CLL, there is a registry that affected families can join 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. The average age of people diagnosed with CLL is 71.

• Gender. Men develop CLL more often than women.

• Race/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. It also occurs commonly in black people. The reason(s) for these differences 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.

• Monoclonal B-cell lymphocytosis. This is a condition in which people have higher than usual levels of lymphocytes. But, these levels are not high enough to classify as CLL. There is a slight risk that monoclonal B-cell lymphocytosis can turn into CLL.

The next section in this guide is Symptoms and Signs . It explains what body changes or medical problems CLL can cause. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, CLL. Doctors may also do tests to learn which treatments could work best. For CLL, it may be best to visit a hematologist-oncologist for diagnosis. A hematologist-oncologist is a doctor who specializes in diagnosing and treating blood cancers.

This list describes options for diagnosing CLL. Not all tests listed below will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

• The type of leukemia suspected

• Your signs and symptoms

• Your age and general health

• The results of earlier medical tests

The following tests may be used to diagnose CLL:

• Blood tests. The process of diagnosing CLL usually begins with a routine blood test called a complete blood count (CBC) . A CBC measures the number of different types of cells in a sample of a person’s blood. A person may have CLL if the blood contains too many white blood cells. This result is 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. The CBC also measures red blood cells and platelets. People with CLL may have low levels of these cells. Low levels of red blood cells is called anemia. A low platelet count is known as thrombocytopenia.

  Blood tests may also be used to collect leukemia cells for testing for specific genetic markers that may be used to predict the risk that the disease will worsen (see Genomic and molecular testing, below).

• Flow cytometry and cytochemistry. In these tests, chemicals or dyes are applied to the leukemia cells in the laboratory. These chemicals and dyes provide information about the leukemia and its subtype. CLL cells have distinctive markers, called cell surface proteins, on the outside of the cell. 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. Flow cytometry, also called immunophenotyping, is the most important test to confirm a diagnosis of CLL.

• Genomic and molecular testing. Your doctor may recommend testing the leukemia cells for specific genes, proteins, chromosome changes, and other factors unique to the leukemia. Because CLL cells divide very slowly, looking at the chromosomes is often less useful than using tests to find specific genetic mutations or changes. Fluorescence in situ hybridization (FISH) assays and other genetic tests, such as polymerase chain reaction, are used to find genetic changes. Some of the genetic changes that occur in CLL include:

  • The deletion of the long arm of chromosome 13 [del(13q)], which is found in about half of patients.

  • An extra copy of chromosome 12 (trisomy 12)

  • del(11q)

  • del(17p)

  • NOTCH1 mutations

  • SF3B1 mutations

  • TP53 abnormalities

  • MYD88 mutations

  • IGVH, which may be important whether it is changed or unchanged

  Results of genetic and molecular testing can determine how quickly the disease will progress and can help determine your treatment options . For example, people with del(17p) are more likely to have difficult-to-treat leukemia and some treatments may work better than others for these patients.

• Imaging tests. CLL is generally found in many parts of the body, even if the disease has been diagnosed early. Imaging tests are rarely needed to diagnose CLL. They are sometimes used before treatment to find all parts of the body that are affected by CLL or to find out whether particular symptoms may be related to CLL. Imaging tests may also be used to see how well treatment is working.

• An x-ray is a way to create a picture of the structures inside of the body, using a small amount of radiation. It may show if leukemia is growing in lymph nodes in the chest.

• A computed tomography(CT or CAT) scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these images into a detailed, 3-dimensional image that shows any abnormalities. It can detect lymph nodes with CLL around the heart, windpipe, lungs, abdomen, and pelvis. A CT scan can be used to measure the size of the lymph nodes. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a liquid to swallow. There is a risk of kidney problems from this contrast medium; talk with your doctor about this before the test.

  CT scans can also help find out if CLL is in other organs, such as the spleen. If a person has no symptoms when diagnosed, a CT scan is generally not needed. When it is needed, it is usually done only before treatment and at the end of treatment.

• Bone marrow aspiration and biopsy . CLL is usually diagnosed with blood tests because the cancerous cells are easily found in the blood. A bone marrow biopsy is usually not needed to diagnose CLL, but it may be done before beginning treatment. For some patients, a bone marrow aspiration and biopsy may help determine prognosis, which is the chance of recovery. It may also provide more information about the reasons that other blood tests are abnormal.

  A bone marrow aspiration and biopsy are similar and often done at the same time to examine the bone marrow before starting treatment. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand. Other types of anesthesia (medication to block the awareness of pain) may also be used.

Your doctor may recommend additional tests before starting treatment to learn more about the leukemia and help plan treatment. After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is leukemia, these results also help the doctor describe the disease. This is called staging.

The next section in this guide is Stages . It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will learn about the different types of treatments doctors use for people with CLL. Use the menu to see other pages.

This section explains the types of treatments that are the standard of care for CLL. “Standard of care” means the best treatments known. When making treatment plan decisions, you are encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn whether the new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of existing drugs or other treatments. Clinical trials are an option to consider for treatment and care for all stages of cancer. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team . Cancer care teams include a variety of other health care professionals, such as physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Treatment options and recommendations depend on several factors, including the type and stage of leukemia, possible side effects, and the patient’s preferences, age, and overall health. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. 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, it is uncertain whether any treatment can completely get rid of CLL, and most patients are not cured of the disease with treatment. The goal of treatment is to ease symptoms and produce a long-term remission (see below).

Descriptions of the common types of treatment used for CLL are listed below. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. Learn more about making treatment decisions .

Watch and wait/active surveillance for early-stage CLL

Patients with symptoms and/or large amounts of CLL in the blood, lymph nodes, or spleen often need treatment shortly after diagnosis. For other patients, however, immediate treatment is not needed. For these people, it is recommended that the disease be monitored carefully without active treatment. This is the standard approach for patients with early-stage disease and no symptoms. This approach might be hard to understand, which can be stressful. However, patients may find that their concerns about this approach lessen over time. Talk with your health care team if you have questions or concerns.

During this time, the patient’s blood counts are watched closely and physical examinations are performed on a regular basis. If the CLL shows signs of worsening, active treatment would then begin. Research studies have shown that no harm comes from the watch-and-wait approach, also called active surveillance or watchful waiting, when compared with immediate treatment for early-stage CLL. Some patients do not develop symptoms for years, or even decades, and will never need any treatment. Patients who have not had their blood counts change over several months or years may only need to have these checked every 3 to 6 months.

Although many patients can live comfortably with CLL without active treatment, it is beneficial to use this time to improve overall health. This includes stopping smoking and bringing all immunizations up to date. However, patients with CLL should not receive the herpes zoster (shingles) vaccine because it may cause a shingles infection in patients who have a lowered immune system.

Treatment is recommended for people with worsening blood counts who have also developed symptoms. These symptoms 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 risk of side effects

Therapies using medication

Systemic therapy is the use of medication to destroy cancer cells. This type of medication is given through the bloodstream to reach cancer cells throughout the body. Systemic therapies are generally prescribed by a hematologist-oncologist.

Common ways to give systemic therapies include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). Systemic therapies may also be given as an injection under the skin, called a subcutaneous injection.

The types of systemic therapies used for CLL include:

• Chemotherapy

• Targeted therapy

Each of these types of therapies are discussed below in more detail. A person may receive only 1 type of systemic therapy at a time or a combination of systemic therapies given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy. Clinical trials evaluating other drugs are described in Latest Research .

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 .

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by ending the cancer cells’ ability to grow and divide.

Common drugs for CLL include:

• Bendamustine (Bendeka, Treanda)

• Fludarabine (Fludara), most common for people with CLL who are younger and do not have a deletion in chromosome 17

• Pentostatin (Nipent)

• Cladribine (Leustatin)

• Chlorambucil (Leukeran)

• Cyclophosphamide (Cytoxan)

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy .

Targeted therapy

Targeted therapy is a treatment that targets the leukemia’s specific genes, proteins, or the tissue environment that contributes to its growth and survival. This type of treatment blocks the growth and spread of leukemia cells while limiting damage to healthy cells.

Not all cancers have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your leukemia. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments . Targeted therapy for CLL includes:

• Monoclonal antibodies. A monoclonal antibody recognizes and attaches to a specific protein in the surface of leukemia cells, and it does not affect cells that do not have that protein. Monoclonal antibodies for CLL include:

• Rituximab (Rituxan)

• Ofatumumab (Arzerra)

• Obinutuzumab (Gazyva)

• Venetoclax (Venclexta)

• Kinase inhibitors. Kinases are enzymes found in both healthy cells and cancer cells. Some cancer cells can be destroyed by drugs that block a particular kinase enzyme. Kinase inhibitors for CLL are fairly new and may only be available for patients with CLL that has returned (called recurrent CLL) or worsened (called refractory CLL) or in clinical trials.

• Ibrutinib (Imbruvica) is approved for people with CLL who have already received at least 1 other treatment. It is also approved as the first treatment for patients with a deletion in chromosome 17. However, it may cause bleeding and is not recommended for patients taking blood thinners.

• Idelalisib (Zydelig) is another type of kinase inhibitor that is given orally. It is also approved for the treatment of recurrent CLL in combination with rituximab.

The side effects of targeted therapy depend on the drug used. Often, a person’s first treatments with rituximab, obinutuzumab, or ofatumumab cause fevers and chills, which usually go away after the first few treatments. Treatment with venetoclax may cause kidney failure and tumor lysis syndrome (TLS), a life-threatening medical emergency that could occur after treatment. However, your doctor may prescribe certain medications to help relieve these symptoms. Learn more about when to call the doctor during cancer treatment .

Combining systemic therapies

A treatment regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. Sometimes, a doctor may use a combination of drugs, but a combination of drugs is not always better than a single drug. 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.

The combinations listed below may be used for CLL. Combinations that include fludarabine are generally used for younger patients:

• Rituximab and fludarabine (sometimes abbreviated as FR)

• Cyclophosphamide and fludarabine (called FC)

• Cyclophosphamide, fludarabine and rituximab (called FCR)

• Pentostatin, cyclophosphamide, and rituximab (called PCR)

• Bendamustine and rituximab (called BR)

• Idelalisib and rituximab for patients with recurrent CLL

• Obinituzumab and chlorambucil for older patients

• Ibrutinib, bendamustine, and rituximab for recurrent CLL

Bone marrow transplantation/stem cell transplantation

A bone marrow transplant is a medical procedure in which bone marrow that contains leukemia is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells 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 it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO used the patient’s own stem cells. ALLO is the type of transplant used for treating CLL and is typically considered for younger patients either when the standard treatments have not worked well or the patient has a high risk of the CLL returning more quickly. The goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow.

Side effects depend on the type of transplant, your general health, and other factors. Learn more about the basics of stem cell and bone marrow transplantation .

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of 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 certain 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 the basics of radiation therapy .

Surgery

Occasionally, surgery to remove the spleen, called a splenectomy, may be recommended because the spleen can become very enlarged in a person with CLL. A surgical oncologist is a doctor who specializes in treating cancer using surgery.

Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have. Learn more about the basics of surgery .

Care for symptoms and side effects

Leukemia and its treatment often cause side effects. In addition to treatments intended to slow, stop, or eliminate the disease, an important part of care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the leukemia at the same time that they receive treatment to ease side effects. In fact, people who receive both at the same time often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the CLL, such as chemotherapy or radiation therapy. Talk with your doctor about the goals of each treatment in your treatment plan.

Palliative treatments for CLL may include:

• Immunoglobulin for infections that keep coming back. Given by IV each month, this may be helpful because people with CLL have fewer normal antibodies to help them fight infections.

• High doses of corticosteroids can help the body stop making antibodies that destroy red blood cells and/or platelets.

• A splenectomy (see Surgery, above), for patients who make antibodies against their own healthy blood cells.

• Rituximab may also be helpful if a patient’s immune system makes antibodies against the body’s own blood cells (see Symptoms and Signs ).

Before treatment begins, talk with your health care team about the possible side effects of the specific treatment plan and palliative care options. During and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care .

Refractory CLL

If the leukemia does not respond to treatment, the disease is called refractory. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

If CLL becomes resistant to 1 drug, meaning that the drug no longer works, other treatments or drugs are often recommended. Palliative care will also be important to help relieve symptoms and side effects.

For most people, a diagnosis of refractory CLL is very stressful and, at times, difficult to bear. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group .

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) occurs when the doctor cannot find any evidence of leukemia remaining after repeated testing. A partial remission (PR) is when there is some leukemia 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 detectable amounts of CLL in the bone marrow.

New monitoring methods, called minimal residual disease (MRD; cancer cells not destroyed by treatment) methods, are better able to find fewer abnormal lymphocytes, as well as tell the difference between the abnormal and healthy lymphocytes. MRD methods are now being used more often to determine depth of remission in patients with CLL.

The goal of newer, more intensive treatments or targeted therapies is to destroy more cancer cells in the hope of lengthening a person’s life. 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. When these sensitive tests can no longer find any CLL, it is called a molecular remission.

The chance of recurrence

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. Recurrent CLL is CLL that has come back after treatment. While many remissions last for a long time, it is important to talk with your doctor about the possibility of the disease returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the leukemia does return. Learn more about coping with the fear of recurrence .

If there is a recurrence, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above such as chemotherapy and targeted therapy, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat this type of recurrent leukemia. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Finding a CLL recurrence does not mean that treatment is needed right away. In fact, the watch-and-wait approach (see above) is usually recommended, with active treatment beginning only if the disease causes symptoms again.

People with recurrent leukemia often experience emotions such as disbelief or fear. You are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence .

If treatment does not work

Recovery from leukemia is not always possible. If the cancer cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and for many people, advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

People who have advanced disease and who are expected to live less than 6 months may want to consider hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Learn more about advanced cancer care planning .

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss .

The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will read about the scientific research being done now to learn more about CLL and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about CLL, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Most cancer centers are focused on clinical trials aimed at increasing the number of patients who have a complete remission. Always talk with your doctor about the best diagnostic and treatment options for you.

• New drugs and drug combinations. Researchers are working to find new drugs for CLL. Different combinations of chemotherapy and targeted therapy are also being studied as a way to increase the likelihood that a patient will have a complete remission and live longer. There are many new drugs for CLL, including many new kinase inhibitors, being evaluated in clinical trials for people with recurrent CLL with the hope of testing some of these drugs as initial therapy in the near future.

• Researchers are also looking at combining ibrutinib with bendamustine, ofatumumab, and rituximab and ibrutinib with fludarabine, cychlophosphamide, and rituximab. Ibrutinib is also being researched along with venetoclax.

• Idelalisib is being studied in combination with bendamustine, rituximab, and ofatumumab.

• Xm5574 is a monoclonal antibody also being researched for treatment of CLL.

• Lenalidomide (Revlimid) is drug commonly used to treat multiple myeloma that is also being looked at as a treatment for CLL, either by itself or in combination with several different drugs for people with recurrent or refractory CLL, as well as for those who have not yet received treatment.

• Dinaciclib is another drug being researched for CLL.

• Duvelisib, a type of kinase inhibitor, is also being researched.

• Genetics. Genetic changes specific to CLL cells are also being evaluated to 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 of the CLL cells

  • Finding different chromosomal abnormalities in the CLL cells

  • Studying the effects of a protein called ZAP-70, which is found 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 is often a large difference in how well treatment works for patients who seem to have the same genetic markers. It is too early to use these tests to make decisions about when to begin treatment and the type of treatment to use.

• Palliative care . Clinical trials are underway to find better ways of reducing symptoms and side effects of current CLL treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding CLL, explore these related items that take you outside of this guide:

• To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases now .

• Listen to a podcast from an ASCO expert discussing highlights from recent scientific meetings.

• Visit the website of Conquer Cancer, the ASCO Foundation , to find out how to help support cancer research. Please note that this link takes you to a separate ASCO website.

The next section in this guide is Coping with Treatment . It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will read about your medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with CLL does not end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead.

People diagnosed with CLL have a higher risk of developing other cancers, particularly lung , colon , or skin cancers . They should tell their doctors if they notice new symptoms or worsening skin problems or moles. The types of chemotherapy used for CLL may damage the DNA in healthy bone marrow cells and cause a different type of leukemia several years later. This is called therapy-related myeloid leukemia.

People who received treatment for CLL should also tell their doctors right away if they notice any change in how they feel or develop new symptoms. It’s important not to wait until your next appointment to talk with your doctor about these changes. Learn more about the importance of follow-up care .

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Leukemia recurs because a small number of leukemia cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress .

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to keep track of the treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship . It describes how to cope with challenges in everyday life after a CLL diagnosis. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to help manage your care.

Questions to ask after getting a diagnosis

• What is my diagnosis?

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

• What stage or risk group is the CLL? What does this mean?

• Should I get a second opinion before starting treatment?

Questions to ask about choosing a treatment and managing side effects

• Who will be leading my overall treatment?

• How often do you treat people with CLL?

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

• Will I need to stay in the hospital for treatment?

• What are my options for treatment?

• What is the goal of each treatment option?

• What clinical trials are available for me? Where are they located, and how do I find out more about them?

• What treatment plan do you recommend? Why?

• If a clinical trial is recommended, will I receive treatment nearby or will I need to travel to the treatment center?

• What is the goal of each treatment? Is it to eliminate the leukemia, help me feel better, or both?

• Who will be part of my health care team, and what does each member do?

• Do I need to start treatment right away? If not, please explain why treatment does not need to 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?

• Could this treatment affect my sex life? If so, how and for how long?

• Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?

• If I’m worried about managing the costs of medical care, who can help me?

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

• Whom should I call with questions or problems?

Questions to ask about having targeted therapy or chemotherapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• What side effects can I expect during treatment?

• What are the possible long-term effects of having this treatment?

• What can be done to relieve the side effects?

Questions to ask about planning follow-up care

• What is the chance that the CLL will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the treatment I received?

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

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

• Who will be leading my follow-up care?

• How do I get a treatment summary and survivorship care plan to keep in my personal records?

The next section in this guide is Additional Resources . It offers some more resources on this website beyond this guide that may be helpful to you. Use the menu to choose a different section to read in this guide.