Just Diagnosed With Chronic Lymphocytic Leukemia (CLL)? What to Know About Treatment

This article is for patients who've just been diagnosed with chronic lymphocytic leukemia (CLL) and their care partners, or anyone who wants to learn more about CLL. The goal of this patient education activity is help patients engage in shared decision-making with their doctor about treatment for newly diagnosed CLL.

You will learn about:

• What CLL is

• First-line treatment options for CLL that's just been diagnosed

• Possible side effects of treatment

• How treatment may be given and the importance of taking it as directed

• Questions to ask your doctor

All medicines listed in this activity may not be approved by the US Food and Drug Administration (FDA) for CLL but are recommended by the National Comprehensive Cancer Network (NCCN).

Before you start, please answer this question. At the end of the program, you'll have a chance to answer the question again and then see the correct answer.

Chronic lymphocytic leukemia, or CLL, is cancer of the bone marrow (where blood cells are made) and of a type of white blood cells called lymphocytes.

When cells become cancer (leukemia) cells, they grow out of control and don't die off like they normally would. As a result, they build up and crowd out healthy cells. Cancer cells can then spillover from the bone marrow into the bloodstream.

Once in the bloodstream, cancer cells can reach other parts of the body, sometimes by the time cancer is first found, or diagnosed.

CLL often progresses slowly, so not everyone will need to start treatment right away. Your doctor may recommend watching and waiting, or observation, first. Some people may not need treatment for years, or at all.

If treatment is recommended, it will be based on several factors, including your symptoms, test results, and cancer stage. The goals of treatment are to reduce symptoms, control the cancer, and improve your quality of life.

There are several treatment options your doctor may recommend, including medicines (alone or in combination), chemoimmunotherapy (chemotherapy, or "chemo," combined with immunotherapy), or joining a clinical trial.

If treatment is recommended, the first one is called first-line, and there are several options available.

Medicines your doctor may recommend, either alone or in combination, can include:

• Kinase inhibitors, such as ibrutinib and acalabrutinib

• BCL-2 inhibitors, such as venetoclax

• Antibody treatment, such as obinutuzumab, rituximab, and alemtuzumab

Steroids, such as methylprednisolone, or chemoimmunotherapy may also be recommended.

Your doctor will consider many factors when recommending treatment. No one treatment is for everyone, so you will make a treatment plan together that best fits your needs.

Different treatments can have different side effects. Some of the side effects of first-line treatments can include:

• Fatigue (tiredness)

• Infections

• Fever and/or chills

• Headache

• Nausea, vomiting, and diarrhea

• Muscle and joint pain

• Rash

• Changes in certain blood cell levels

Some treatments may also cause heart or blood pressure problems, shortness of breath, or certain reactions when given into a vein (IV) as an infusion.

All treatments can have side effects, and not all are listed here. Ask your doctor for a complete list and when you should call your doctor or go to the emergency room because of side effects.

Some treatments may be given continuously, while others may be given in "cycles." With a cycle you'll have treatment for 1 or more days, and then rest so your body can recover. Some treatments may be given in multiple cycles.

How long you take treatment for will depend on how your body responds, any side effects, and how your cancer progresses. Some treatments are given for a set amount of time -- such as a few months or a year -- while others may need to be taken for your lifetime.

Certain treatments -- such as ibrutinib, acalabrutinib, and venetoclax -- may be taken by mouth at home. Some people, however, may be admitted to the hospital before starting venetoclax. Other treatments, like obinutuzumab or chemoimmunotherapy, are given by IV infusion in a clinic or hospital.

Your doctor may recommend additional medicines before, during, or after treatment to help manage certain side effects, such as a possible reaction from an IV infusion.

Talk to your doctor and healthcare team before treatment so you know how, where, and when your treatment will be given.

It's important to take treatment as directed and not miss or skip doses. This could affect how well your body responds to treatment and how your cancer progresses. Don't stop or change treatment before talking to your doctor first.

Before you start treatment, tell your doctor about any other medicines you take, including those you can get without a prescription.

Also ask your doctor about side effects that may happen, and be sure to discuss any you do have. Some side effects can go away on their own over time, but others may last longer. Together, you can discuss ways to manage them.

Tracking and recording your treatment and any side effects can be helpful for when you talk to your doctor.

Questions you can ask your doctor about CLL that's just been diagnosed and first-line treatment can include:

• What treatments are available?

• What are the possible side effects and how can they be managed?

• How, where, when, and for how long will I take treatment?

• How will I know if treatment is working?

• Is there a clinical trial I might be eligible for?

• How can I make sure I have the best quality of life possible?

• Are there any lifestyle changes I should make?

• What should I do if I feel stressed or depressed?

• Are there resources available for financial assistance?

Congratulations!

You have successfully completed the program Just Diagnosed With Chronic Lymphocytic Leukemia (CLL)? What to Know About Treatment.

View Additional Materials on this topic that you may find useful:

Chronic Lymphocytic Leukemia Treatment

What Is Chronic Lymphocytic Leukemia?

Chronic Lymphocytic Leukemia (CLL)