- What is Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
- Diagnosis and Staging
- Treatment and Side Effects
- Coping with CLL/SLL
Chronic lymphocytic leukemia (CLL) is a cancer that begins in B lymphocytes or B cells. These are a type of white blood cell. B lymphocytes are part of the immune system and make antibodies to attack bacteria, viruses, and toxins.
Small lymphocytic lymphoma (SLL) is a cancer that affects the lymphocytes. CLL and SLL are the same disease, but in CLL, cancer cells are found mostly in the blood and bone marrow. In SLL, cancer cells are found mostly in the lymph nodes. CLL and SLL are often referred to as CLL/SLL. CLL/SLL is also a type of non-Hodgkin lymphoma.
Talking About CLL/SLL
You will hear many words used to describe cancer. Some key ones to know are:
Anemia: A low number of red blood cells.
Chronic: This type of leukemia develops slowly. Symptoms do not appear right away. A diagnosis may be made at a regular check-up or through a blood test.
Leukemia: Cancer of the blood cells that makes them unable to fight infection. It also causes the cells to grow out of control and crowd out healthy cells.
Lymphocytic: Referring to lymphocytes, a type of white blood cell.
Marrow: The soft middle of many large bones. Blood cells are made in the bone marrow.
Who Gets CLL?
CLL is one of the most common types of leukemia in adults. It often occurs in older adults after age 40. About 9 out of 10 people with CLL are over age 50. The average age at diagnosis is 71 years. It’s very rare in children. There are about 21,000 new cases of CLL in the United States each year. The risk is slightly higher in men than in women.
Your doctor will want to see you and order blood tests if they suspect you have CLL. Your results will help determine the best treatment for you.
In diagnosing CLL, your doctor will begin with a physical exam and ask many questions. Describe how you have been feeling and any changes you have noticed. Next, your doctor will order a variety of lab tests.
The following lab tests are used at the time of diagnosis and for monitoring CLL over time:
- A complete blood count (CBC) is first done to see if you have lower-than-normal levels of red cells and platelets. The CBC also counts the number and type of white blood cells present. See our Complete Blood Test page for information on normal results for CBC tests.
- Flow cytometry (flow test) to see if the cancer cells have specific antigens or proteins on their cell surface. This is critical for diagnosing CLL. This test also can help predict the progression of CLL.
- Fluorescence in situ hybridization (FISH) to see if the cancer cells have abnormal chromosomes or genes. This test also can help predict the progression of CLL.
- IGVH (immunoglobulin heavy chain variable region mutation) analysis to test for genetic mutations. This test can help determine the best treatment.
- Next generation DNA sequencing looks for specific changes (or mutations) to the cancer cell’s genes [such as a mutation in the TP53 gene or a shortening of chromosome 17, also called del(17p)], which may predict your response to treatment.
In addition to the tests mentioned above, the stage of CLL you have helps the doctor determine which treatment options are best for you.
The Rai staging system is used to divide patients into two groups: lower and higher risk CLL.
- Low-Risk CLL: Too many lymphocytes in the blood
- Intermediate-Risk CLL: Too many lymphocytes in the blood and either the lymph nodes, liver, or spleen are enlarged
- High-Risk CLL: Too many lymphocytes in the blood, either too few red blood cells (anemia) or too few platelets
If you have Low- or Intermediate-Risk CLL, treatment may not be needed now. Signs to start treatment include:
- Symptoms of active CLL, such as drenching night sweats
- Severe fatigue
- Fever without proof of infection
- Unplanned weight loss
- Low red blood cell or platelet counts
Contact your doctor if you notice any of these signs.
After being diagnosed with CLL, your doctor will tell you which treatments are best for you or if you should wait before starting treatment. Your doctor may ask you what you want to do. This is called treatment planning. You may make choices at the start of treatment and again along the way.
There are a number of treatments that work well for CLL. Though most current treatments do not cure CLL, they do help manage it. While some people with CLL can live for years without treatment, most people will need to be treated on and off for years.
Treatment depends on:
- The stage of the disease
- Your age and overall health
- Red blood cell, white blood cell, and platelet blood counts
- Symptoms such as fever, chills, or weight loss
- Larger than normal liver, spleen, or lymph nodes
- Genetic mutations such as P53 or 17p deletion
- Results from additional molecular testing using the lab tests listed in the Diagnosis section
- Whether the CLL has come back
“Watch and Wait”
If you have a slow-growing CLL, you may not need treatment right away. Instead, watchful waiting (also called “watch and wait”) may be the safest approach for your care. With watchful waiting, you see a doctor regularly but don’t begin treatment until needed.
Studies show that watchful waiting does not cause any harm for people with early-stage CLL when compared to starting treatment right away. Watchful waiting delays treatment related side effects, while still allowing your treatment to begin when needed (when symptoms occur or if the CLL cells increase in number).
Immunotherapy improves the body’s natural defenses against leukemia. One type is a substance called a monoclonal antibody. It is given by IV and binds to leukemia cells, killing them or helping the immune system destroy them.
Drug that are currently approved target the CD 20 protein. Not all people get all side effects, be sure tell your health care team about the side effects you have.
Chemotherapy is almost always combined with immunotherapy, which increases how well it works. Chemotherapy by itself is rarely used to treat CLL.
Chemotherapy kills fast-growing leukemia cells but can also harm fast-growing healthy cells, causing side effects. With chemoimmunotherapy, you could experience both immunotherapy and/or chemotherapy side effects. However, most people do not experience all side effects. Be sure tell your health care team about the side effects you have.
Targeted therapies treat the cancer cells with less harm to normal cells. These drugs often can control CLL, so people do not need to start chemotherapy right away.
Taking Targeted Therapy
Targeted therapies for CLL are pills you can take at home. It is important to follow the directions for when to take the pills and not to forget to take them. For your therapy to work well, you must take them exactly as directed. Otherwise, they may not work properly.
Tips for making sure your targeted therapy works well:
- Take all pills on schedule. Things that can help:
- Set reminders for every dose on your phone, watch, or travel alarm.
- Use a pill calendar or a pill organizer that shows you when pills need to be taken and whether you have taken them
- Store pills where you will see them every day
- Follow your doctor or pharmacist’s instructions on what to do if you miss a dose
- Ask your doctor or pharmacist about whether you need to avoid certain foods, take your pills with food, or take them on an empty stomach.
Stem Cell Transplant
In a stem cell transplant (SCT), patients get an infusion of healthy blood-forming cells (stem cells). CLL patients get stem cells from a matched donor. This is called an allogenic (or “allo”) stem cell transplant. You get chemotherapy and/or radiation to make room for the donor stem cells. An allo transplant can help treat CLL because the donor cells recognize cancer cells as something foreign, and will attack any remaining cancer cells in your body. This is called “graft-versus-tumor” (GVT) effect.
Side effects of stem cell transplants include infections, bleeding, and other side effects of the large doses of chemotherapy or radiation given. Stem cell transplants from donated stem cells can lead to Graft-Versus-Host Disease (GVHD). In GVHD, the donated white blood cells attack your normal tissues. This most often affects the liver, skin, or digestive tract. GVHD can be mild or severe, and can occur at the time of transplant or years later.
For more information, visit our Stem Cell Transplant page.
Be sure to ask about clinical trials. Clinical trials are research studies to test new treatments or learn how to use existing treatments better. Today’s newest treatments were studied in yesterday’s clinical trials. Today’s clinical trials may become tomorrow’s newest treatments.
Key things to know:
- Clinical trials for CLL are done to test new treatments, combinations of treatments, or different ways of doing stem cell transplant.
- A doctor experienced in treating CLL should be able to recommend specific trials.
- The U.S. Food and Drug Administration (FDA) and local review boards oversee all U.S. clinical trials to keep patients safe.
- If you join a clinical trial, you can leave at any time.
- Every doctor does not have the same trials.
- Often, the trial pays the costs of the drug being studied. Then, your health insurance and your copay cover “standard” treatment costs. Be sure to ask what costs you may incur.
CAR T cell therapy
One treatment used for other blood cancers that is being tested (in clinical trials) for CLL is called chimeric antigen receptor (CAR) T cell therapy. This therapy uses a person’s own immune cells (T cells) to identify and attack cancer cells.
In CAR T cell therapy, T cells are taken from a patient’s blood and sent to a lab. There, the cells are modified so they can better find and attack cancer cells. The modified T cells are re-injected into the patient to fight cancer. For more information on CAR T Cell Therapy, visit www.CancerSupportCommunity.org/CART or the CAR_T section at CLLSociety.org.
Managing Side Effects
After you start treatment, keep track of how you feel. Write down when you notice a problem, how long it lasts and if there is anything that makes it better. It is important to let your health care team know. There may be medicine or other ways to manage side effects that will help you feel better. Consider using our Preparing for Your Doctor’s Visit worksheet. It can help you talk with your health care team about symptoms, treatment options, side effects, and getting the emotional and practical support you need.
Here are two examples of important side effects reported by CLL patients:
- Infections: People with CLL have a higher risk of infection. Antibiotics are often used to treat them. If you keep getting infections, injections of immunoglobulin (gamma globulin) or drugs to increase white cells may help. Also, ask your doctor whether you are up to date with needed vaccines.
- Fatigue: Cancer-related fatigue is a feeling of tiredness that doesn’t go away. Some people also have muscle weakness or difficulty concentrating. It may be caused by the cancer, by treatment, or other health problems. If you have cancer-related fatigue, your doctor will try to find and treat what is causing your fatigue.
CLL is different from other cancers because in many cases, people living with CLL do not need treatment right away. Waiting to treat your cancer can be difficult to deal with, causing you stress and anxiety about what the future holds. It can be frustrating to feel like you’re not doing anything to fight the cancer. You can regain control of your care by taking the active steps listed below to help you cope.
Tips for Coping
- Ask your health care team questions until you understand why watchful waiting or your current treatment is a good choice for you.
- Know if there are signs or symptoms that you should tell your care team about right away.
- Control what you can. If you smoke, get help to stop. Exercise regularly, as long as it is approved by your care team. Eat healthy foods and maintain a healthy weight.
- Know that you will be more anxious when it gets close to your doctor’s appointments. Be gentle with yourself when you are feeling stressed.
Finding the Support You Need
- Share your feelings with friends, family members, a counselor, or a clergyperson.
- A counselor or a therapist can help you cope with anxiety. Other things that can help are yoga, breathing, and relaxation exercises.
- Ask for help from friends and your community. The Cancer Support Community’s MyLifeLine.org is a great way to coordinate this online.
- Contact CLL patient groups to find local and online support groups, helplines, and other ways to seek support from people who have CLL.
Ask your health care team about resources for social, emotional, and practical support. Let them know about your concerns. Before each visit, fill out our Preparing for Your Doctor’s Visit worksheet.
If you search for information online, make sure you are using trusted websites.
See our Coping with CLL booklet for more information.
CLL affects not only those with the disease, but also the people who care for them. Caregiving for a person with CLL can be stressful and frustrating. You may feel angry, guilty, alone, afraid, or sad. If you are caring for a person with CLL:
- Find support. Share your feelings with others. Look for caregiver support groups, either in person or online. Ask the patient’s cancer center if they have a support program for caregivers.
- Look for extra help. Ask family, friends and members of your community if they can help. If they offer, give them specific tasks. If you can afford it, consider hiring people to help care for the person with CLL. Or have them help with chores, childcare or errands.
- Take breaks. Carve out time for yourself. Spend time with people important to you, and take time for activities you enjoy. Don’t feel guilty about making time for yourself—it is important for your own health.
- Take care of yourself. Just as the person with CLL needs to pay attention to their diet, exercise and sleep, so do you. If you smoke, find a smoking cessation program. Limit alcohol.
- Learn about the Family and Medical Leave Act (FMLA). You may qualify to take up to 12 weeks of unpaid, job-protected leave to care for a seriously ill family member.
- Learn about financial assistance. You may have high out-of-pocket costs from parking, transportation and food as part of your caregiving duties. Ask the hospital where the person with cancer is receiving treatment if they can provide help with financial counseling for caregivers.
See our Caregivers page for more information and support.
Costs and Expenses
The treatment for CLL and follow-up appointments can be costly. Keeping up with these costs might be overwhelming. Many families facing cancer say that financial worries about cancer costs are a big source of stress, and they don't know where to turn.
Visit our Managing the Costs of Cancer Treatment page for resources that can help
FSAC: Coping with Chronic Lymphocytic Leukemia (CLL)
FSAC: Coping with Chronic Lymphocytic Leukemia (CLL)Download PDF
FSAC: Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
FSAC: Chronic Lymphocytic Leukemia/Small Lymphocytic LymphomaDownload PDF