Chronic lymphocytic leukemia: Practical guide for patients

Chronic lymphocytic leukemia (CLL) is the most common type of adult leukemia in Western countries. It often grows slowly, so many people have no symptoms at first and learn about it after a routine blood test. But CLL can change over time, so knowing what to watch for and when to act matters.

Most people with CLL are older adults. Typical signs include swollen lymph nodes, persistent fatigue, night sweats, unexplained weight loss, and repeated infections. If a doctor suspects CLL they will order a complete blood count. A very high lymphocyte count leads to further tests like flow cytometry, which confirms the diagnosis, and genetic testing such as FISH or TP53 mutation tests to guide treatment choices.

A key idea with CLL is that early diagnosis does not always mean immediate treatment. For many patients with slow disease and no symptoms doctors recommend watchful waiting—regular checkups and blood tests to track changes. Treatment starts when symptoms appear, blood counts fall, or the disease progresses quickly.

Treatment options have changed a lot in recent years. Traditional chemotherapy and chemoimmunotherapy still work for some, but targeted drugs are now common. BTK inhibitors like ibrutinib and acalabrutinib block signals that cancer B cells use to survive. Venetoclax targets a protein that helps CLL cells avoid death and is often given with an antibody called obinutuzumab. These therapies often control disease longer and have different side effect profiles than older chemo drugs.

High-risk or younger patients may be considered for stem cell transplant or clinical trials of new approaches like CAR-T cell therapy. If genetic tests show a TP53 mutation or 17p deletion, doctors usually prefer targeted agents over standard chemo.

Managing side effects and infection risk is part of care. CLL and its treatments lower immune defenses. Get flu and pneumococcal vaccines as advised, but avoid live vaccines if immunocompromised. Discuss Shingrix for shingles prevention. Report fevers, new coughs, or unusual infections quickly. Some patients need preventive antibiotics or immunoglobulin infusions when infections are frequent.

Practical tips for daily life: keep a list of current medications, get routine bloodwork, and bring a caregiver or friend to important appointments. Ask your team about fertility, travel vaccines, and timing of surgeries. Consider a second opinion before starting long-term treatment; many patients benefit from consulting a leukemia specialist.

Clinical trials can offer access to newer drugs and combinations. If you are offered a trial, ask about side effects, how the study measures success, and what follow-up care looks like.

Living with CLL means balancing monitoring with life. With modern treatments and good follow-up many people live years with good quality of life. Stay active, report changes early, and build a care team you trust.

Questions to ask your doctor

What tests do I need? When will treatment start if needed? Which drugs fit my genetic results and why? What are the common side effects and how are they managed? Are there trials I qualify for and who will coordinate my care?

Keep records, stay informed.