Each year in the United States, approximately 20,000 people are diagnosed with chronic lymphocytic leukemia (CLL), a cancer of the blood and bone marrow. Because of new treatment options, long-term survival and quality of life continue to improve for people diagnosed with this type of cancer.

In CLL, the body produces too many lymphocytes, a type of white blood cell that helps fight infection. The stages (progression) of CLL are determined by:

  • The number of lymphocytes in the blood.
  • The enlargement (if any) of the lymph nodes, liver, or spleen.
  • The presence of blood disorders such as anemia (too few red blood cells) or thrombocytopenia (too few platelets).

Treatment options for CLL depend on several factors, including the stage of the cancer, whether or not it is causing symptoms, and the person’s overall health. People with early-stage CLL typically don’t receive treatment; instead, their condition is monitored by their health care team, primarily through blood tests. This monitoring is sometimes called “watchful waiting.”

If treatment is recommended, you and your doctor will discuss the approach that is right for you, based on your individual circumstances.

Chemotherapy

Chemotherapy drugs, given intravenously (through a needle into a vein) or in pill form, can kill cancer cells. Chemotherapy has long been an effective treatment for CLL, and continues to be an important treatment option for many patients.

The types of chemotherapy most often given to treat CLL are:

  • Purine analogs, including fludarabine (Fludara), pentostatin (Nipent), and cladribine (Leustatin). Purine analogs are “antimetabolites” that interfere with DNA production and halt the growth of cancer cells.
  • Alkylating agents, including chlorambucil (Leukeran) and cyclophosphamide (Cytoxan). These drugs are often used in combination with a purine analog. Alkylating agents are designed to kill cancer cells.
  • Bendamustine (Treanda), an alkylating agent that has some of the same properties as purine analogs.

Chemotherapy treatment often combines two or more drugs, as this seems to be a more effective approach than administering one drug alone (monotherapy). An often-used combination is called FCR, from the initials of the drugs it contains: fludarabine, cyclophosphamide, and rituximab (rituximab is not a chemotherapy; it belongs to a group of drugs called monoclonal antibodies).

Chemo-immunotherapy is a treatment option that combines chemotherapy with monoclonal antibodies (see next section: Targeted Treatments).

Targeted Treatments

Targeted treatments focus on binding to specific molecules thought to be important for cancer cell survival and growth. Targeted treatments are meant to spare healthy tissues and cause fewer side effects than chemotherapy.

Drugs of this type used to treat CLL include:

  • Monoclonal antibodies. Antibodies are small proteins that are part of the body’s immune system, and are important in the body’s fight against infection. Anti-cancer monoclonal antibodies are made in the laboratory and then administered to the patient, targeting cancer cells. Monoclonal antibodies, which are often used in combination with chemotherapy, include alemtuzumab (Campath), obinutuzumab (Gazyva), ofatumumab (Arzerra), and rituximab (Rituxan), among others.
  • Kinase inhibitors. Kinase proteins are molecules that serve as important signals to the cell’s control center; by doing so, they can help tumor cells grow. Ibrutinib (Imbruvica) inhibits the function of a type of kinase called BTK. Idelalisib (Zydelig) acts as a phosphoinositide 3-kinase inhibitor.
  • Immunomodulatory agents. Lenalidomide (Revlimid) helps the bone marrow produce healthy blood cells while killing abnormal cells. It has been shown to be an effective approach after initial treatment with chemotherapy.

Additionally, research is being conducted on “next-generation” versions of ibrutinib and idelalisib (kinase inhibitors). These drugs will work in the same way, with modifications intended to make them more effective, with fewer side effects.

In April 2016, the U.S. Food and Drug Administration (FDA) approved venetoclax (Venclexta), a small molecule oral drug that targets the B-cell lymphoma 2 (BCL-2) protein, for the treatment of patients with CLL who have a chromosomal abnormality called 17p deletion. The BCL-2 protein supports cancer cell growth, and is “overexpressed” (too high) in many patients with CLL.

All cancer treatments can cause side effects. It’s important that you report any side effects you experience to your health care team so they can help you manage them. Report them right away—don’t wait for your next appointment. Doing so may improve your quality of life and allow you to maintain your treatment plan. It’s important to remember that not all patients experience all side effects, and patients may experience side effects not listed here.

CLL itself carries a risk of infection, and treatment can increase that risk. Your doctor may recommend a medication to help prevent infection. Notify your health care team immediately if you experience a fever, as this is a sign of a possible infection.

Side Effects of Chemotherapy

The side effects of chemotherapy depend on the type and dose of drugs given and the length of time they are used, and can include:

  • Hair loss
  • Easy bruising or bleeding
  • Changes in memory or thinking
  • Peripheral neuropathy (numbness or tingling in hands and feet)
  • Mouth sores

Side Effects of Targeted Treatments

Drugs used in targeted treatments typically don’t have the same effect on the body as do chemotherapy drugs, but they can still cause side effects. Common side effects of targeted therapy may include rashes, diarrhea, liver problems (such as elevated liver enzymes), problems with blood clotting and wound healing, and high blood pressure.

Your specific targeted treatment may have unique side effects. It’s important to have a discussion with your health care team to understand what these potential side effects are, how to reduce the risk of their occurring, and how to minimize their impact should you experience them.

General Side Effects

Some side effects may occur across treatment approaches; this section provides tips and guidance on how to manage these side effects should they occur.

Managing Digestive Tract Symptoms

Nausea and vomiting

  • Avoid food with strong odors, as well as overly sweet, greasy, fried, or highly seasoned food.
  • Eat meals cold or at room temperature, which often makes food more easily tolerated.
  • Nibble on dry crackers or toast. These bland foods are easy on the stomach.
  • Having something in your stomach when you take medication may help ease nausea.

Diarrhea

  • Drink plenty of water. Ask your doctor about using drinks such as Gatorade that also provide electrolytes. Electrolytes are body salts that must stay in balance for cells to work properly.
  • Over-the-counter medicines such as loperamide (Imodium A-D and others) and prescription drugs are available for diarrhea but should be used only when necessary and if suggested by your health care team. If the diarrhea is bad enough that you need medicine, discuss it with your doctor or nurse.
  • Choose foods that contain soluble fiber—for example beans, oat cereals, oranges, and flaxseeds. High-pectin foods such as peaches, apples, oranges, grapefruit, bananas, and apricots can also help to avoid diarrhea.
  • Avoid food high in refined sugar and those sweetened with sugar alcohols such as sorbitol and mannitol. Look for this low-calorie sweetener on food labels; the names of this type of sweetener usually end with the letters “ol.”
  • Low fat food choices are less likely to cause diarrhea than fatty, greasy, or fried foods. The fats you eat should come from healthy sources, such as olive oil, canola oil, avocado, olives, nuts, and seeds.
  • Limit or avoid lactose, especially if you are lactose-intolerant. There are plant-based milk alternatives you can try, such as soy or rice milk. If lactose is an essential part of your diet, there are dairy products with added lactase (which breaks down lactose) and dietary lactase supplements.

Loss of appetite

  • To help maintain your weight, eat small meals throughout the day. That’s an easy way to take in more protein and calories. Try to include protein in every meal.
  • To keep from feeling full early, avoid liquids with meals or take only small sips (unless you need liquids to help swallow). Drink most of your liquids between meals.
  • Be as physically active as you can. Sometimes, taking a short walk an hour or so before meals can help you feel hungry.
  • Keep high-calorie, high-protein snacks on hand such as hard-boiled eggs, peanut butter, cheese, ice cream, granola bars, liquid nutritional supplements, puddings, nuts, canned tuna, or trail mix.
  • Eat your favorite foods any time of the day. For example, if you like breakfast foods, eat them for dinner.
  • If you are struggling to maintain your appetite, talk to your health care team about whether appetite-building medication could be right for you.

Managing Fatigue

Fatigue (extreme tiredness not helped by sleep) is one of the most common side effects of many cancer treatments. If you are taking a medication, your doctor may lower the dose of the drug, as long as it does not make the treatment less effective. If you are experiencing fatigue, talk to your doctor about whether taking a smaller dose is right for you.

There are a number of other tips for reducing fatigue:

  • Take several short naps or breaks.
  • Take short walks or do some light exercise, if possible.
  • Try easier or shorter versions of the activities you enjoy.
  • Ask your family or friends to help you with tasks you find difficult or tiring.

There are also prescription medications that may help. Your health care team can provide guidance on whether medication is the right approach for your individual circumstances.

Fatigue can be a symptom of other illnesses, such as anemia, diabetes, thyroid problems, heart disease, rheumatoid arthritis, and depression. So be sure to ask your doctor if he or she thinks any of these conditions may be contributing to your fatigue.

Managing Pain

There are a number of options for pain relief, including prescription and over-the-counter medications. It’s important to talk to a member of your health care team before taking any over-the counter medication, to determine if they are safe and will not interfere with your treatments.

As you manage your cancer, it’s important to remember that you are a consumer of health care. The best way to make decisions about health care is to educate yourself about your diagnosis and get to know the members of your health care team, including doctors, nurse practicitioners, physician assistants, nurses, dietitians, social workers and patient navigators. Here are some tips for improving communication with your health care team:

Start a health care journal. Having a health care journal or notebook will allow you to keep all of your health information in one place. You may want to write down the names and contact information of the members of your health care team, as well as any questions for your doctor. Keep a diary of your daily experiences with symptoms related to your illness or treatment. You can separate your journal or notebook into different sections to help keep it organized.

Prepare a list of questions. Before your next medical appointment, write down your questions and concerns. Because your doctor may have limited time, you should ask your most important questions first, and be as specific and brief as possible.

Bring someone with you to your appointments. Even if you have a journal and a prepared list of questions or concerns, it’s always helpful to have support when you go to your appointments. The person who accompanies you can serve as a second set of ears. He or she may also think of questions to ask your doctor or remember details about your symptoms or treatment that you may have forgotten.

Write down your doctor’s answers. Taking notes will help you remember your doctor’s responses, advice, and instructions. If you cannot write down the answers, ask the person who accompanies you to do that for you. If you have a mobile device, ask if you can use it to take notes or record the conversation. Taking notes will help you review the information later.

Frequently Asked Questions

Q: Is stem cell transplantation a treatment option for CLL?

A. A stem cell transplant is a procedure in which diseased bone marrow (the spongy tissue inside bones where blood cells are made) is replaced with healthy bone marrow. It is not a common treatment approach for CLL, as there are a number of effective drugs available that avoid the risk associated with a stem cell transplant. Stem cell transplantation may be recommended in certain circumstances; for example, cases where the CLL has not responded to other treatment approaches.

If stem cell transplantation is chosen as a treatment for CLL, stem cells are harvested (removed) from a donor (often a close relative, such as a brother or sister) and subsequently delivered to the patient. The stem cells are then “infused” (transplanted) into the body, where they travel to the bones and begin rebuilding bone marrow.

Q: What reasons would warrant the move from watchful waiting to treatment for my CLL? A. Many patients living with CLL can stay on watchful waiting for a long period of time, even years. There is well-established criteria for beginning treatment, including the experience of certain symptoms, such as:

  • Severe fatigue
  • Significant unintended weight loss
  • Excessive sweating
  • Pain coming from the spleen
  • Enlarged lymph nodes
  • Certain changes in blood counts

It is essential that you visit your doctor regularly for blood tests and to alert him or her of any symptoms you might be having.

Q: My health care team says I may experience constipation as a side effect of my CLL treatment. What can I do to avoid that?

A: Constipation is a potential side effect of CLL treatments, particularly chemotherapy. If you do experience constipation, alert your health care team and be sure to follow their instructions to help alleviate your discomfort, including the possible use of medications and stool softeners.

Some general tips to avoid constipation:

  • Hydration is important; drink plenty of fluids. Also, limit your intake of caffeine and alcoholic beverages, as they can cause dehydration.
  • Include foods high in fiber in your daily diet, such as fruit (especially pears and prunes), vegetables, and cereals. If your health care team approves, you may want to add synthetic fiber to your diet, such as Metamucil, Citrucel, or FiberCon.
  • Be as physically active as you can, first checking with your doctor on the level of physical activity that is right for you.
  • If your doctor has prescribed a “bowel regimen,” make sure to follow it exactly.

Q. What is a treatment summary and why is important?

A: A treatment summary, sometimes called a “shadow chart,” is a document you create and which remains in your possession. Maintaining your own records allows you and your family members instant access to the specifics of your CLL diagnosis and treatment. A treatment summary should include:

  • Your name and date of birth.
  • Date of diagnosis.
  • Name, affiliation, and contact information of the doctor who gave the diagnosis.
  • Prescribed therapy/therapies; include dates started and stopped, and dosages when appropriate.
  • Dates and types of post-diagnosis testing, and the results.
  • Other medication and supplements you are taking.
  • Names, affiliations, and contact information of all members of your health care team.

Talk to your doctor or a member of your health care team about your intention to create a treatment summary, and ask them what else they suggest be included. Take your treatment summary with you when you visit any health care provider, not just your oncologist.

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This booklet has been made possible by Pharmacyclics, Inc., AbbVie and Gilead.

Last updated August 24, 2017

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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