Understanding Your Treatment Options for Newly Diagnosed Chronic Lymphocytic Leukemia (CLL)

This article is for people newly diagnosed with chronic lymphocytic leukemia (CLL) and their care partners, or anyone who wants to learn more about CLL. The goal of this activity is to help people work with and talk to their doctor about treatment for CLL.

You will learn about:

• What CLL is

• Making a plan with your doctor

• Watching and waiting as an option

• First-line treatment for newly diagnosed CLL, how it may be given, and managing possible side effects 

• Working with your doctor and healthcare team, and questions you can ask

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).

Chronic lymphocytic leukemia, or CLL, is a type of cancer that starts in your lymphocytes (a type of white blood cell) and bone marrow, the tissue inside your bones where most blood cells are made.

With CLL, leukemia cells (cancer cells) grow out of control and don't die off like normal cells would. They can then build up and crowd out your healthy cells.

Once leukemia cells build up enough, they can spill over into your bloodstream and can travel to other parts of your body. This can sometimes happen by the time CLL is first found (diagnosed).

There's no one treatment for newly diagnosed CLL that's for everyone, so you and your doctor will make a plan together that best fits your individual needs.

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

If your doctor recommends treatment, they will consider several factors, including your overall health, symptoms, test results, and cancer stage.

During watching and waiting, it's important to keep all your medical appointments and tests so your doctor and healthcare team can keep an eye on any CLL symptoms and your blood counts.

You can help protect your quality of life during this time by maintaining a healthy lifestyle by:

• Eating a healthy diet and limiting alcohol

• Staying active and keeping a healthy weight

• Getting enough sleep

• Not smoking or using tobacco

• Avoiding infections and getting all recommended vaccines

• Finding ways to cope with stress

• Talking to a counselor or joining a support group

These tips can also be helpful to follow if or when your doctor recommends treatment.

If treatment is recommended, the first one you get is called first line. The goals of treatment will be to reduce your symptoms, control cancer, and improve your quality of life.

Types of treatment your doctor may recommend can include:

• Medicines, alone or in combination, such as:

  o Kinase inhibitors, such as acalabrutinib, ibrutinib, and zanubrutinib

  o BCL-2 inhibitors, such as venetoclax

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

  o Steroids, such as methylprednisolone

  o Chemoimmunotherapy that combines chemotherapy ("chemo") with immunotherapy

• Joining a clinical trial

• Supportive care

All treatments can have side effects, and different medicines can have different ones. Ask your doctor about which can happen with the medicines you're taking and when you should contact them or seek emergency medical care.

Some side effects can go away on their own over time, but others may last longer. Your doctor may recommend additional medicines before, during, or after treatment to help with certain side effects.

Be sure to tell your doctor and healthcare team about any side effects you have and how they affect your daily life. As part of your treatment plan, you can discuss ways to manage them together.

Ask your doctor and healthcare team how, where, when, and for how long each treatment will be given. Some may be continuous, while others may be given in 1 or more "cycles" (treatment for 1 or more days, then your body rests).

Certain medicines can be taken orally (by mouth), while others are given by infusion into a vein (IV) in a clinic or hospital. Some people may also be admitted to the hospital for certain medicines.

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

Having open communication with your doctor and healthcare team is important. Be sure to ask them about your treatment options and let them know about any other medicines you take -- including those you can get without a prescription -- as well as any herbals and supplements. Using a journal or diary can be helpful for when you talk.

Sticking to your plan is also important. Keep all your medical appointments and take medicines as directed. Don't skip, stop, or change treatment without talking to your doctor first.

Questions you can ask your doctor about newly diagnosed CLL can include:

• Will I need treatment right away?

• If treatment is recommended, what are my options?

• What are the possible side effects, and how can we manage them?

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

• How will we know if treatment is working?

• Is there a clinical trial I can participate in?

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

• Is there a support group I can join?

• Where can I find more information and resources, including financial assistance?

Congratulations!

You have successfully completed the program Understanding Your Treatment Options for Newly Diagnosed Chronic Lymphocytic Leukemia (CLL).

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

Chronic Lymphocytic Leukemia

CLL

CLL Diagnosis and Treatment

Chronic Lymphocytic Leukemia Treatment