Before Treatment

After chronic lymphocytic leukemia (CLL) has been diagnosed and staged, the next step is gathering information to decide if and when treatment is needed. Be sure to ask your doctor these questions as you discuss options.

• Should I start treatment now? Why or why not?
• What is the goal of treatment?
• What are my treatment options?
• What do you recommend and why?
• What are the short and long-term risks and side effects of the treatment you recommend?
• How long will the treatment last? What will it be like?

Treatment Options

Here is an overview of the main treatment therapies available for CLL.

• Chemotherapy: drugs taken by mouth or injected to kill or control cancer cells. Chemotherapy is given in cycles to give the body time to recover. The major drugs used for CLL are purine analogs and alkylating agents. Common side effects include hair loss, mouth sores, loss of appetite, nausea, vomiting and low blood counts. The low blood counts increase the risk of infections, fatigue, and easy bruising or bleeding.
• Corticosteroids: active anti-inflammatories and immune-suppressors that inhibit multiple inflammatory cytokines (chemical messengers) and suppress most components of the body’s immune response to challenges, such as infections, allergies and cancers. The most commonly used steroids include dexamethasone, methylprednisolone and prednisolone.
• Monoclonal antibodies: man-made versions of antibodies that are designed to attach to proteins on the surface of cancer cells. They help the immune system destroy cancer cells. In CLL, these drugs can target the cluster of differential (CD) 20 (CD20) or CD52 antigen. Given by infusion into a vein, they can cause side effects such as itching, chills, fever, nausea, rashes, fatigue and headaches during the infusion or several hours afterward. In some cases, dormant infections can become active again during the course of treatment. Some people experience more serious side effects, such as chest pain, racing heart, swelling of the face and tongue, cough, trouble breathing, and dizziness while using drugs that target the CD20 antigen.
• Targeted therapy: newer drugs that target the changes that make CLL cells cancerous. For example, Imbruvica (ibrutinib) blocks the activity of a protein that signals CLL cells to divide and prolongs their survival. This drug is taken as a pill, and its side effects are usually mild, such as diarrhea, nausea, constipation, fatigue, shortness of breath, swelling of hands and feet, body aches, rash and low blood counts. Zydelig (idelalisib), also taken orally, blocks the activity of a growth signaling protein called phosphoinositide 3-kinase. Common side effects include diarrhea, fever, fatigue, nausea, cough, fatigue, pneumonia, belly pain, chills, rash and low blood counts. More serious, less common include liver damage, severe diarrhea, lung inflammation, serious allergic reactions, severe skin problems and perforations in the colon. Venclexta (venetoclax) targets the B-cell lymphoma 2 protein that promotes cancer cell survival, and it is used for patients who have a chromosome 17p deletion. The drug is taken as a pill, and possible side effects include low blood counts, diarrhea, nausea, respiratory infections and feeling tired. Less common but more serious side effects include pneumonia, other serious infections and tumor lysis syndrome, which can cause kidney, heart and nervous system problems.

Supportive Care

Other strategies do not treat CLL but, instead, address side effects caused by the cancer and treatment.

• Infection prevention: When people with CLL have low levels of antibodies needed to fight infection, donated antibodies in the form of IV immunoglobulin can be given. Anti-viral or antibiotic drugs help reduce the risk of infections like pneumonia. If a dormant virus like hepatitis becomes more active during CLL treatment, drugs can be prescribed to keep these infections under control. People with CLL should also get the pneumonia vaccine every five years and the flu shot every year, but vaccines that contain live viruses, such as the shingles vaccine, should be avoided.
• Low blood cell count treatments: Transfusions are an option for people with CLL who have low red blood cell or platelet counts. In some cases, platelet transfusions will not help, and doctors may prescribe drugs that affect the immune system or suggest removing the spleen.
• Stem cell transplant: Chemotherapy, immunotherapy and/or targeted therapy can control CLL for a long time, but if these treatments stop working, a stem cell transplant could be useful. In an autologous transplant, the patient’s own stem cells are collected from the blood or bone marrow and then given back after treatment. In the allogeneic transplant, stem cells come from a donor. Transplants are given in conjunction with high doses of chemotherapy to clear cancer cells more effectively and allow the bone marrow regenerate and produce normal blood cells.

When weighing your options, consider participating in a clinical trial to receive the newest cancer treatment. New approaches include the use of chimeric antigen receptor T cell therapy, which uses lymphocytes from the patient that are genetically engineered to detect and kill CLL cells, and drugs that target cancer-driving proteins generated by specific genetic changes in cancer cells.