Chronic lymphocytic leukemia

Treatment for CLL

Unlike most cancers, chronic lymphocytic leukemia (CLL) is a long-term condition that may not need to be treated for many years. When it is time for treatment, doctors have more options today than ever before to control the disease or put it into remission.

Small lymphocytic lymphoma (SLL) is closely related to CLL. In SLL, cancer cells are found in the lymph nodes and spleen. In CLL, cancer cells are found in the blood and bone marrow. Most of the information in this treatment section about CLL also applies to SLL.

Fred Hutchinson Cancer Center is one of just a few treatment centers in the country that provides every kind of standard therapy for CLL and also gives you access to the latest innovations through clinical trials. Our CLL specialists work closely with you, your family and each other to make the best plan for you.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Lymphoma Cancer that begins in the cells of the immune system. There are two basic categories of lymphomas: Hodgkin lymphoma and non-Hodgkin lymphomas. Cancer that begins in cells of the immune system. There are two basic categories of lymphomas. One is Hodgkin lymphoma, which is marked by the presence of a type of cell called the Reed-Sternberg cell. The other category is non-Hodgkin lymphomas, which includes a large, diverse group of cancers of immune system cells. Non-Hodgkin lymphomas can be further divided into cancers that have an indolent (slow-growing) course and those that have an aggressive (fast-growing) course. These subtypes behave and respond to treatment differently. Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and prognosis and treatment depend on the stage and the type of cancer. Remission A decrease in, or disappearance of, signs and symptoms of cancer. A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some (but not all) signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. Spleen An organ that is part of the lymphatic system. The spleen makes lymphocytes, filters the blood, stores blood cells and destroys old blood cells. It is on the left side of the abdomen near the stomach. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.

Treatment Plan

CLL treatment is highly customized for each patient’s needs.

How do we create your treatment plan?

Your Fred Hutch hematologist-oncologist works with an entire group of doctors who specialize in lymphoid cancers like CLL. They include other hematologist-oncologists, radiation oncologists, bone marrow transplant specialists and researchers who are all looking for better ways to treat this disease.

Every week, this team meets in one room. The meeting is called a tumor board. Together, dozens of team members discuss their patients’ treatment plans. This approach means each patient benefits from the experience of the whole group.

The Fred Hutch experts at these meetings, including your doctor, will:

Talk about if your CLL needs treatment and, if so, when treatment should begin
Talk about all possible treatments for your situation
Decide which therapies will be most promising for you
Check if any clinical trials match your needs, so you can think about joining them

If you have high-risk CLL, we have a dedicated subgroup of providers that focuses on designing your care.

Your care team will walk you and your caregiver through the treatment plan we recommend for you. You will have a chance to share your personal preferences, and you will decide together what happens next.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Radiation oncologist A physician who has special training in using radiation to treat cancer. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

Why do treatment plans differ?

The treatment plan we design for you depends on many things, including:

Your CLL stage
Any chromosome or gene changes in your leukemia cells (like a missing part of a chromosome or having an extra chromosome)
If you have a change in the gene IgHV (immunoglobulin heavy-chain variable region gene)
If you have symptoms
Your age and general health
How quickly your leukemia cells grow
Your values, needs and preferences, like what type of treatment schedule works in your life and if you want to join a clinical trial

These factors guide decisions about which standard therapies and which clinical trials are the best match for you.

Chromosome Part of a cell that contains genetic information. Except for sperm and eggs, all human cells contain 46 chromosomes. Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

What is the standard therapy for CLL?

Treatment for CLL can be very different from person to person. Patients who do not have symptoms or low blood counts are often on watchful waiting.

If your CLL is getting worse quickly or is higher risk, the standard therapy for most people is targeted therapy or immunotherapy. There are many ways to combine medicines to improve results. Some people with high-risk disease who have already tried other treatments have a bone marrow transplant.

The goal of active treatment is to put your disease into long-term remission. When you aren’t in remission, the goals are to slow the disease and reduce any symptoms.

At Fred Hutch, our standard always involves caring for you as a whole person. We help you get relief from side effects and provide many other forms of support, like integrative medicine, nutrition counseling and physical therapy.

Our patients can choose to have promising, new CLL therapies that you can get only through a clinical trial. Many people come to Fred Hutch for access to these studies. Your care team will tell you about studies that might be right for you, so you can think about joining them.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Immunotherapy A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. A therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. Some immunotherapies only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG) and some monoclonal antibodies. Integrative medicine Combines conventional (standard) medical treatment with complementary and alternative (CAM) therapies that have been shown to be safe and to work. CAM therapies treat the mind, body and spirit. Remission A decrease in, or disappearance of, signs and symptoms of cancer. A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some (but not all) signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Targeted therapy A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. Some targeted therapies block the action of certain enzymes, proteins or other molecules involved in the growth and spread of cancer cells. Other types of targeted therapies help the immune system kill cancer cells, or they deliver toxic substances directly to cancer cells and kill them. Targeted therapy may have fewer side effects than other types of cancer treatment. Most targeted therapies are either small molecule drugs or monoclonal antibodies. Watchful waiting Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. During watchful waiting, patients may be given certain tests and exams. Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. Watchful waiting is sometimes used in prostate cancer. It is a type of expectant management.

Treatment Process

Some people with CLL can safely wait years, maybe even decades, to begin active treatment. In fact, some never need treatment at all. If you do need active treatment, we choose, combine and schedule your therapies based on what works for CLL like yours. Your care team makes sure you understand each type of treatment and all of your choices.

Watchful waiting for CLL

This is also called observation or active surveillance. It means you and your doctor closely monitor your health for any changes, like signs that your CLL is clearly getting worse.

During watchful waiting, you will visit your doctor for exams and have blood tests on a regular schedule. The schedule depends mainly on your health. We also ask you about your preferences. Some people want to come in more often, especially in the early months after their diagnosis. Then, if their disease is stable, they get comfortable letting more time pass between visits.

In between scheduled visits, you are not on your own. We are here. If you notice health changes, we encourage you to call so we can check if you do need active treatment.

Research shows there is no benefit to starting treatment for CLL early. However, there are benefits to waiting until symptoms begin to bother you, your levels of blood cells get worse or there are other signs that the disease is progressing.

The main benefits of waiting include:

You can keep living your life without much of a change. You will not have side effects from treatments you do not need.
When you do need treatments later, they will still work just as well.
Better options might be available in the future.

Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose. Surveillance Closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. In medicine, surveillance means closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. It may also be used for a person who has an increased risk of a disease, such as cancer. During surveillance, certain exams and tests are done on a regular schedule. In public health, surveillance may also refer to the ongoing collection of information about a disease, such as cancer, in a certain group of people. The information collected may include where the disease occurs in a population and whether it affects people of a certain gender, age or ethnic group. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Watchful waiting Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. During watchful waiting, patients may be given certain tests and exams. Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. Watchful waiting is sometimes used in prostate cancer. It is a type of expectant management. Watchful waiting Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. During watchful waiting, patients may be given certain tests and exams. Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. Watchful waiting is sometimes used in prostate cancer. It is a type of expectant management.

Watchful waiting for CLL

If your CLL is low or intermediate risk, your doctor may recommend watchful waiting.

Targeted therapy for CLL

Chemotherapy used to be the main treatment for this disease. Now, most people do very well with targeted therapies and immunotherapies. As result, chemotherapy has little to no role.

Targeted therapies work in one of three ways:

They target a gene or protein that causes cancer growth.
They damage cancer cells directly.
They tell your immune system to attack certain cells. This is also called immunotherapy.

Your hematologist-oncologist will prescribe your targeted therapy and set your treatment schedule. Targeted therapies are usually given as a pill that you take at home. Some are given by infusion in repeating cycles. Liquid medicine is put into a vein through an intravenous (IV) line. This can be a line in your arm (peripheral venous catheter) or a port in your chest (central venous catheter).

You get infusions in a dedicated area of the clinic. Cancer nurses who are experts in infusions will give you these treatments. They will also monitor you during the treatment. They respond to any medical issues that come up and help keep you comfortable.

We have several options that target different features of CLL. Some are used as first-line treatments. Some are saved and used after trying other treatments first. They can be used alone or with other medicines.

Options for targeted therapy

Examples of targeted CLL therapies include:

Ibrutinib, acalabrutinib and zanubrutinib. They block the enzyme called Bruton’s tyrosine kinase.
Venetoclax. It targets CLL with the BCL-2 protein.
Idelalisib and duvelisib. They block the protein PI3K.

Some medicines can be thought of as both immunotherapies and targeted therapies — like rituximab, ofatumumab and obinutuzumab. They target the CD20 protein.

More targeted therapies are being tested and are available through clinical trials.

Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Immunotherapy A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. A therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. Some immunotherapies only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG) and some monoclonal antibodies. Immunotherapy A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. A therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. Some immunotherapies only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG) and some monoclonal antibodies. Infusion An injection of medications or fluids into a vein over a period of time. Infusion An injection of medications or fluids into a vein over a period of time. Targeted therapy A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. Some targeted therapies block the action of certain enzymes, proteins or other molecules involved in the growth and spread of cancer cells. Other types of targeted therapies help the immune system kill cancer cells, or they deliver toxic substances directly to cancer cells and kill them. Targeted therapy may have fewer side effects than other types of cancer treatment. Most targeted therapies are either small molecule drugs or monoclonal antibodies. Targeted therapy A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. Some targeted therapies block the action of certain enzymes, proteins or other molecules involved in the growth and spread of cancer cells. Other types of targeted therapies help the immune system kill cancer cells, or they deliver toxic substances directly to cancer cells and kill them. Targeted therapy may have fewer side effects than other types of cancer treatment. Most targeted therapies are either small molecule drugs or monoclonal antibodies.

Targeted therapy for CLL

For some types of CLL, you may get targeted therapies. These are more exact than standard chemotherapy, which affects all fast-growing cells throughout the body.

Immunotherapy for CLL

Your hematologist-oncologist will prescribe immunotherapies and set your treatment schedule. For CLL, doctors usually use medicines called monoclonal antibodies that target CD20. CD20 is a protein on the surface of some cells, including CLL cells. These medicines include rituximab (Rituxan®), ofatumumab (Arzerra®) and obinutuzumab (Gazyva®). These drugs are often used along with other novel (new) therapeutic agents.

Researchers at Fred Hutch are also studying cellular immunotherapies, such as CAR T-cell therapy, for CLL. In CAR T-cell therapy, we remove immune cells called T cells from your blood. We genetically modify them to attack cancer cells and then return them to your body.

Antibody A protein made by immune system cells and released into the blood. Antibodies defend the body against foreign substances, such as bacteria. Chimeric antigen receptor T-cell therapy A type of treatment in which a patient's T cells (a type of immune system cell) are changed in the laboratory so they will attack cancer cells. A type of treatment in which a patient's T cells (a type of immune system cell) are changed in the laboratory so they will attack cancer cells. T cells are taken from a patient’s blood. Then, in the laboratory, the gene for a special receptor that binds to a certain protein on the patient’s cancer cells is added to the T cells. This special receptor is called a chimeric antigen receptor (CAR). Large numbers of the CAR T cells are grown in the laboratory and given to the patient by infusion. Chimeric antigen receptor T-cell therapy is used to treat certain blood cancers, and it is being studied in the treatment of other types of cancer. Also called CAR T-cell therapy. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Immunotherapy A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. A therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. Some immunotherapies only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG) and some monoclonal antibodies. T cell A type of white blood cell. T cells are part of the immune system and develop from stem cells in the bone marrow. They help protect the body from infection and may help fight cancer. A type of white blood cell. T cells are part of the immune system and develop from stem cells in the bone marrow. They help protect the body from infection and may help fight cancer. Also called T lymphocyte and thymocyte.

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Immunotherapy for CLL

Immunotherapies use the power of your immune system to fight your cancer. They have helped change CLL care.

Blood or marrow transplant for CLL

A small number of CLL patients may have a transplant if they have high-risk CLL that does not respond to other targeted treatments or if the disease comes back.

For CLL, doctors do a transplant using stem cells from a donor. This is called an allogeneic transplant. (For other diseases, they may use the patient’s own stem cells.) First, you get strong chemotherapy to get rid of your CLL. Then the donor’s healthy stem cells restart your body’s ability to make blood cells. Also, white blood cells from the donor may recognize any remaining CLL cells as foreign and attack them.

A team of Fred Hutch transplant experts will care for you. Your team will include a transplant oncologist, transplant nurse, physician assistant or advanced registered nurse practitioner, pharmacist, dietitian, team coordinator and social worker.

Doctors and researchers at Fred Hutch pioneered blood and marrow transplants decades ago. Our researchers continue to improve transplant techniques and to develop new options.

Allogeneic stem cell transplant Uses bone marrow or stem cells from a related or unrelated donor whose tissue type closely matches the patient’s. Replaces blood-forming cells that have been destroyed by disease or cancer treatment. Uses bone marrow or stem cells from a donor whose tissue type closely matches the patient’s to replace blood-forming cells that have been destroyed by disease or cancer treatment. This can be from a related or unrelated donor. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Nurse practitioner A registered nurse who has additional education and training in how to diagnose and treat disease. In cancer care, a nurse practitioner may manage the primary care of patients and their families. A registered nurse who has additional education and training in how to diagnose and treat disease. Nurse practitioners are licensed at the state level and certified by national nursing organizations. In cancer care, a nurse practitioner may manage the primary care of patients and their families, based on a practice agreement with a physician. Oncologist A physician who has special training in diagnosing and treating cancer. Some oncologists specialize in a particular type of cancer treatment, such as treating cancer with radiation. A physician who has special training in diagnosing and treating cancer. Some oncologists specialize in a particular type of cancer treatment. For example, a radiation oncologist specializes in treating cancer with radiation. Physician assistant A health professional who is licensed to do certain medical procedures under the guidance of a physician. A health professional who is licensed to do certain medical procedures under the guidance of a physician. A physician assistant may take medical histories, do physical exams, take blood and urine samples, care for wounds and give injections and immunizations. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells.

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For caregivers: Caregiving for transplant patients

Caregivers have a special role in blood and marrow transplants. This intense treatment involves chemotherapy (and sometimes radiation) with serious side effects. During the initial recovery period, which often takes at least a month, your loved one will need daily help. We have classes to help transplant caregivers get ready. During recovery, a transplant registered nurse is available by phone 24 hours a day, 7 days a week, to help you.

Blood or marrow transplant for CLL

A blood or marrow transplant resets your body’s ability to make healthy blood cells. Researchers at Fred Hutch pioneered this form of treatment.

Monitoring your health

While you are in active treatment, your CLL care team will see you regularly for exams and tests to check:

How well your treatment is working
If there is any reason to change your treatment
If you need help with side effects or supportive care services, like nutrition care or mental health counseling

We update your treatment plan based on the best scientific evidence as well as how your disease responds and what you prefer.

Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

What are the possible results of treatment?

Throughout treatment, your care team looks for signs of:

Active disease: CLL is still present during or after treatment, or it has come back.
Minimal residual disease: Standard tests do not find any CLL cells in your blood or bone marrow. But more sensitive tests do find some cells.
Remission: Fewer signs and symptoms of cancer. Partial remission means there are still some signs and symptoms. Complete remission means there are no signs or symptoms.
Relapse: The disease, signs or symptoms have come back after they had improved.
Refractory disease: The disease does not respond to treatment.

What about “cured”? Sometimes doctors use the word “cured” if cancer has been in complete remission for at least five years. After five years, cancer is less likely to come back (recur), but recurrence is still possible. Doctors do not think of CLL as curable. Instead, the goal is to get lasting remission.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Recurrence Cancer that has come back, usually after a period during which it could not be detected. It may come back to the same place as the original (primary) tumor or someplace else. Also called recurrent cancer. Refractory In medicine, refractory disease is a disease or condition that does not respond to treatment. Relapse The recurrence (return) of disease after an apparent recovery. Remission A decrease in, or disappearance of, signs and symptoms of cancer. A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some (but not all) signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain.

Caregiving during treatment

If your loved one is getting targeted therapy, immunotherapy or chemotherapy, there are many ways you can help. Caregiving during active treatment for CLL often means doing tasks like these:

Keeping track of their appointments and driving them to and from treatment
Watching for changes in their condition and telling their care team about any symptoms
Providing physical care, like helping them take medicines
Spending time with them and encouraging them
Taking care of things at home that they may not be able to do, like grocery shopping and cleaning

Supportive care services

Along with treating your CLL, Fred Hutch provides a range of services to support you and your caregiver, before, during and after treatment. This is part of how we take care of you — not just your disease.

From dietitians to social workers to spiritual health staff, we have experts who specialize in caring for people with cancer. We understand this may be one of the most intense and challenging experiences you and your family ever go through. We are here to provide the care you need.

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Managing side effects

You might be wondering about possible side effects of treatment, like hair loss or nausea from chemotherapy. If you are, it may be helpful to know that many of today’s treatments are more targeted to cancer cells, so they don’t cause the same side effects as standard chemotherapy.

You are always at the center of everything we do. CLL doctors, nurses and advanced practice providers are here to help prevent or relieve side effects of treatment.

Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores.

How to get help with side effects

Before you begin treatment, we talk with you about what to expect, based on your treatment plan, and what can help if you do have side effects.

At your appointments, we want you to tell us about any side effects you are having. If you have questions or concerns between appointments, you can call or email us. We will make sure you know how to reach care providers at Fred Hutch after hours, if that is when you need us.

We have many tools to help you feel better, such as:

Antibiotics, vaccines and antiviral drugs to prevent or treat infections
Transfusions, steroids and medicines that help the immune system to treat low levels of blood cells (low blood counts)
Therapy to lower the number of leukemia cells (leukapheresis) to treat circulation problems or to prevent complications that may happen when targeted therapy or chemotherapy breaks down a large number of tumor cells (tumor lysis syndrome)

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Common side effects of CLL treatment

Side effects are different depending on which treatment you get. They also depend on other things, like how strong your immune system is. These are some of the common side effects of CLL treatment:

Unusual tiredness (fatigue)
Hair loss
Higher risk of infection (due to low levels of white blood cells)
Anemia (due to low levels of red blood cells)
Easy bruising or bleeding (due to low levels of platelets)
Problems in your digestive tract, like sores in your mouth, nausea or vomiting

Anemia A condition in which the number of red blood cells is below normal. Digestive tract The organs that food and liquids travel through when they are swallowed, digested and absorbed before leaving the body as feces. The organs that food and liquids travel through when they are swallowed, digested and absorbed before leaving the body as feces. These organs include the mouth, pharynx (throat), esophagus, stomach, small intestine, large intestine, rectum and anus. The digestive tract is part of the digestive system. Also called alimentary tract and gastrointestinal tract. Platelet A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets help form blood clots to slow or stop bleeding and to help wounds heal. A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets are pieces of very large cells in the bone marrow called megakaryocytes. They help form blood clots to slow or stop bleeding and to help wounds heal. Having too many or too few platelets, or having platelets that do not work as they should, can cause problems. Checking the number of platelets in the blood may help diagnose certain diseases or conditions. Red blood cell A type of blood cell that carries oxygen in the body. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores.

Continuing care

When your disease is in remission and you are not on active treatment, it is still important to get follow-up care on a regular basis. At follow-up visits, you will see the same Fred Hutch team who treated your CLL. They will check your overall health and look for signs that your cancer has come back (signs of recurrence).

Your team will also help with any long-term side effects (which go on after treatment ends) or late effects (which may start after treatment is over).

For people who had a blood or marrow transplant, the Fred Hutch Long-Term Follow-Up Program provides lifelong monitoring and care.

Recurrence Cancer that has come back, usually after a period during which it could not be detected. It may come back to the same place as the original (primary) tumor or someplace else. Also called recurrent cancer. Remission A decrease in, or disappearance of, signs and symptoms of cancer. A decrease in, or disappearance of, signs and symptoms of cancer. In partial remission, some (but not all) signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose.

Schedule for follow-up visits

Just like we personalize your treatment plan for you, we personalize your follow-up schedule, too. Your hematologist-oncologist will base your schedule on many things, including:

The features of your CLL
Which treatments you had and how your disease responded
How the disease and treatments affected you
How long it has been since your treatment ended

Most patients with CLL are followed for the rest of their life. It is common to have visits more often in the first months and years after active treatment ends and less often as time goes on. This will depend on your exact needs.

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

What happens at follow-up visits

Follow-up for CLL usually means seeing your hematologist-oncologist for a physical exam and having blood tests to check your blood cell levels.

If there is any cause for concern, you might have tests to check the health of your bone marrow. Together, you and your doctor will go over the benefits and risks of any follow-up options and decide what is right for you.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues.

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