Working With Your CLL Healthcare Team

Anita A. Galdieri, PharmD, RPh Disclosures Published on Jul 31, 2024

This article is for people who are living 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 you talk to and work with your doctor and healthcare team.

You will learn about:

What CLL is
Treating CLL and the goals of treatment
Types of treatment for CLL
Your treatment plan 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).

Test Your Knowledge

What Is CLL?

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, cancer cells (leukemia cells) grow out of control and don't die off like normal cells would. They can then build up in your bone marrow and spill over into your bloodstream where they can travel to other parts of your body.

Treating CLL

CLL often progresses slowly, so not everyone will need to start treatment right away. So your doctor may recommend regular monitoring of your symptoms and tests results -- called observation, active surveillance, or watch and wait -- first.

If treatment is recommended, it will depend on many factors including your:

Personal preferences
Overall health
Other conditions and medicines you take
Symptoms and cancer stage
Test results, including biomarkers. Biomarkers are changes in cancer cells that can be different for different people. Knowing which biomarkers are present can help provide information about how CLL may progress or which treatments may work

Types of Treatment

The goals of CLL treatment are to reduce symptoms, control cancer, and improve your quality of life. No one treatment is for everyone, so you and your doctor and healthcare team will make a treatment plan together that best fits your individual needs.

Types of treatment they may recommend, alone or in combination, can include:

Lifestyle changes
Medicines
Bone marrow or stem cell transplant to replace your bone marrow with healthy bone marrow or damaged stem cells with healthy stem cells
Joining a clinical trial
Supportive or palliative care to help improve your quality of life

Lines of Therapy

Using multiple treatments can be common with CLL. The first treatment is called first-line therapy. If first-line doesn't work or stops working, second-line therapy is next. Third-line therapy is used after first-line and second-line therapy.

Treatment that may be recommended as your next line of therapy can depend on several factors, including:

Which treatment you already had, how well it worked, how long the results lasted, and any side effects that happened
Your overall health and personal preferences for care
Previous or new biomarkers. Some biomarkers may change over time, including after you start treatment

Medicines to Help Treat CLL

Types of medicines that your doctor may recommend, alone or in combination, can include:

Kinase inhibitors that block certain enzymes and keep cancer cells from growing
BCL-2 inhibitors that block certain proteins and help increase cancer cell death
Antibody therapy, a type of immunotherapy that marks cancer cells to help your immune system find and destroy them
Chemotherapy ("chemo") to help kill cancer cells. Chemotherapy and antibody therapy used together is called chemoimmunotherapy
Steroids to help decrease inflammation (swelling)

First-line therapy often includes a kinase inhibitor or BCL-2 inhibitor. Other options are antibody therapy or chemoimmunotherapy. If first-line doesn't work (refractory CLL), a different type of treatment may be recommended next. If CLL comes back (relapse), the same treatment or different treatment may be recommended next.

Managing Side Effects

All treatments can have side effects, and different medicines can have different ones. Be sure to ask your doctor or healthcare team member about which can potentially happen with your treatment so you can find ways to help manage them.

Some side effects can go away on their own, but others may last. Your doctor may recommend additional medicines to help with certain side effects and/or different treatment if your side effects aren't managed.

But it's important to take all treatments as directed and not stop or change any before speaking with your doctor, nurse, or other healthcare team member. Missing or skipping doses could affect how well your body responds to treatment and how cancer progresses.

Talking With Your Doctor and Healthcare Team

Having open and honest communication with your doctor and healthcare team is important.

Be sure to ask about all your different treatment options. Not all treatments for CLL are the same and there can be different medicines within each type. Some treatments may work better for you than others, so you may need to try a few different ones. There may also be certain treatments you can't take because of side effects or other reasons.

Recording your treatments and any side effects and how they impact your quality of life in a journal or diary can help for when you talk.

Donnie talks about working with his doctor and healthcare team on his treatment plan for CLL.

Questions to Ask Your Doctor and Healthcare Team

Questions you can ask about CLL can include:

What are the different treatment options, and what are their possible side effects?
How can side effects be managed?
How will we know if treatment is working?
If treatment isn't working, is there another one we can try?
Is there a clinical trial I can join?
How can I have the best quality of life possible?
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?