Recognizing the Signs That CLL Treatment Should Begin
- Many people with chronic lymphocytic leukemia (CLL) do not need treatment immediately and instead undergo “watchful waiting,” an active surveillance approach involving regular blood tests, physical exams, and symptom monitoring by their medical team.
- Dr. Kathryn A.F. Kline, a hematologist from the University of Maryland, says her approach to CLL “is not to treat it unless the patient really needs to be treated.”
- When doctors determine that it is time to begin treatment, targeted therapies called BTK (Bruton tyrosine kinase) inhibitors may be taken continuously or combined with other targeted drugs as part of a time-limited treatment plan.
- Deciding which treatment path is best involves weighing the disease’s genetic features, the patient’s overall health, potential side effects, other medications, and personal preferences around treatment duration and overall quality of life.
“My approach to CLL or SLL (small lymphocytic leukemia) is not to treat it unless the patient really needs to be treated,” Dr. Kathryn A.F. Kline, a hematologist with the University of Maryland, tells SurvivorNet. (SLL is the same disease as CLL, but it primarily affects the lymph nodes, while CLL is mainly found in the blood and bone marrow.)
Read MoreMonitoring CLL Before Treatment
Patients who do not have symptoms or signs that the disease is progressing may enter a period known as “watchful waiting” or active surveillance (also referred to as “watch and wait”). This does not mean doctors are ignoring the cancer. Patients undergo regular blood tests, physical exams, and symptom checks so their care team can identify meaningful changes.RELATED: Watchful Waiting In CLL: Why ‘Not Treating’ Is Sometimes the Most Effective Approach
A rising white blood cell count alone does not always mean treatment needs to begin. Doctors look at the full picture, including how quickly the lymphocyte count is increasing, changes in red blood cells and platelets, enlarging lymph nodes or organs, and the development of symptoms.
Research has not shown that treating early-stage, asymptomatic CLL improves survival.
Blood Counts Can Signal Disease Progression
Symptoms are not the only reason doctors may recommend treatment. CLL cells can accumulate in the bone marrow and interfere with its ability to produce healthy blood cells.
A falling red blood cell count can lead to anemia, which may cause fatigue, weakness, dizziness, or shortness of breath. A declining platelet count can make it harder for the blood to clot, potentially causing easy bruising or bleeding.
Doctors may also consider how rapidly the number of abnormal lymphocytes is rising. Under International Workshop on CLL guidelines, treatment may be appropriate when there is clear evidence of active or progressive disease — not simply because CLL has been diagnosed.
Symptoms to Look Out For
Treatment may be considered when CLL begins causing symptoms such as “bad fatigue, night sweats, fevers, weight loss,” Dr. Kline explains. Patients should report new or worsening symptoms promptly rather than waiting until their next scheduled appointment.
An enlarged “liver or spleen” that causes discomfort or makes it “hard to eat” may also signal that it is time to begin treatment, Dr. Kline says. Both organs help manage the blood, but they have different roles. The liver makes proteins needed for blood clotting, processes nutrients, and removes toxins. The spleen filters the blood, removes old or damaged blood cells, stores platelets, and helps fight infection.
Here is a full list of symptoms:
- Severe or persistent fatigue
- Drenching night sweats
- Unexplained fevers
- Unintentional weight loss
- An enlarged liver or spleen that causes pain, fullness, or difficulty eating
- Declining red blood cell or platelet counts
Another warning sign is when a patient has “big lymph nodes that are uncomfortable or impairing their quality of life,” Dr. Kline adds. “Those are the times we really think about treatment.”
BTK Inhibitors For CLL Treatment
When it comes time for treatment, doctors then must figure out what scenario may be best.
Dr. Kline says she “might put them on a BTK (Bruton tyrosine kinase) inhibitor by itself versus a combination therapy, [but] to some extent it depends on disease characteristics.”
BTK inhibitors are oral targeted therapies that block a protein CLL cells rely on to grow and survive. Common BTK inhibitors include:
- Ibrutinib (Imbruvica)
- Acalabrutinib (Calquence)
- Zanubrutinib (Brukinsa)
Unlike traditional chemotherapy, these drugs target specific processes within cancer cells, limiting damage to healthy cells. However, they can still cause side effects that require monitoring.
RELATED: BTK Inhibitors for CLL Treatment: What Side Effects Can I Expect and How Do I Manage Them?
Dr. Kline says she’s “a little more nervous about putting a patient on time-limited therapy” if certain mutations suggest that their “duration of response will be shorter” and “they’ll need re-treatment sooner.”
“And so those might be patients where I favor open-ended treatment,” she adds.
Time-Limited vs Continuous Treatment
Time-limited treatment is given for a planned period and then stopped if the patient responds well. It commonly combines targeted drugs to achieve a deep remission and provide several treatment-free years.
Open-ended, or continuous, treatment is taken indefinitely — as long as it controls the CLL and side effects remain manageable. BTK inhibitor therapy is often given this way, and for some patients, it can work well for up to 10 years or maybe more.
RELATED: Time-Limited or Continuous? How Chronic Lymphocytic Leukemia Treatment Is Decided
Treatment may be stopped or changed if the CLL progresses, side effects become tough to tolerate, another health concern develops, or the patient and doctor decide a different approach is more appropriate.
Patient Preferences Shape Treatment
“And then some of it also depends on patient characteristics,” she adds.
“If a patient really doesn’t want to come into the office or doesn’t want to get IV medications, putting them on just a BTK inhibitor or a BTK inhibitor plus the BCL-2 inhibitor, venetoclax (Venclexta), might be a good option.” Venetoclax targets the BCL-2 protein on CLL cells, causing cell death.
“If their priority is really for time-limited therapy versus less intense therapy, those kinds of patient preferences shape my choices too.”
Questions to Ask Your Doctor
- Does my CLL need treatment now, or can it continue to be monitored?
- What symptoms or changes in my blood counts would signal that it is time to begin treatment?
- Do my genetic test results affect which treatment may work best?
- Would time-limited or continuous therapy be more appropriate for me?
- What side effects should I expect, and how can they be managed?
- How often will I need blood tests, physical exams, or office visits?
Learn more about SurvivorNet's rigorous medical review process.
