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Questions and answers

Questions about CLL

Chronic lymphocytic leukemia (CLL) usually progresses slowly and is often found by chance on a routine blood test.

Last updated: ~1 min read
CLL: small lymphocytes build up in the blood
Figure 1.CLL: small lymphocytes build up in the blood

01Short answer

CLL is a chronic leukemia in which B lymphocytes slowly build up; it mostly affects older people. Many people need no treatment for a long time after diagnosis: the doctor chooses “watch and wait” (active monitoring). Treatment starts when there are symptoms, worsening blood counts or growing lymph nodes. Today the main treatments are targeted drugs (BTK and BCL2 inhibitors), sometimes with antibodies. In CLL the immune system is weakened, so protecting yourself from infection matters.

02Simple explanation

In CLL mature-looking but non-working lymphocytes build up in the blood, marrow and lymph nodes.

The disease can move very slowly.

03Scientific explanation

Stage is assessed with the Rai or Binet system; TP53 changes, del(17p) and IGHV mutation status matter for outlook and treatment choice.

In early, symptom-free CLL, early treatment has not been shown to help, so active monitoring is standard.

04What happens in the body?

What “watch and wait” means

It is not doing nothing. Regular blood tests and check-ups are done and the doctor follows the course. Treatment starts when it is needed.

When treatment is needed

Severe tiredness, night sweats, weight loss, growing lymph nodes or spleen, anaemia or falling platelets can be reasons to treat.

Watch and wait: regular checks
Figure 2.Watch and wait: regular checks

Infections

CLL weakens immunity. If you have a fever, cough or other signs of infection, tell your doctor quickly. Plan vaccines with your team.

The lymph nodes — Questions about CLL
Figure 3.The lymph nodes — Questions about CLL

05The path in CLL

From diagnosis to treatment.

Found on a blood test — Lymphocytes are raised.1Found on a blood testLymphocytes are raised.
Watch and wait — Regular monitoring.2Watch and waitRegular monitoring.
Time to treat — Symptoms and counts guide the decision.3Time to treatSymptoms and counts guide the decision.
Targeted treatment — Medicines bring the disease under control.4Targeted treatmentMedicines bring the disease under control.
Calm monitoringWaiting is a strategy.
Watch for infectionsSeeking help early matters.

06Key points at a glance

TopicIn brief
What “watch and wait” meansIt is not doing nothing. Regular blood tests and check-ups are done and the doctor follows the course. Treatment starts when it is needed.
When treatment is neededSevere tiredness, night sweats, weight loss, growing lymph nodes or spleen, anaemia or falling platelets can be reasons to treat.
InfectionsCLL weakens immunity. If you have a fever, cough or other signs of infection, tell your doctor quickly. Plan vaccines with your team.

07Key terms

B lymphocyte
A white blood cell that makes antibodies.
Active monitoring
No treatment, but regular checks.
IGHV status
A genetic marker that affects outlook.

08Key points

  • CLL usually progresses slowly.
  • Monitoring often comes first.
  • Treatment starts when symptoms appear.
  • Protection from infection matters.

09Frequently asked questions

Isn’t it frightening not to be treated?

In early CLL waiting is an evidence-based approach.

What if my lymph nodes grow?

Mention it at your next visit or sooner.

Can people live long with CLL?

Many live for years; the doctor assesses outlook individually.

10Questions for your doctor

Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.

  1. Isn’t it frightening not to be treated?

  2. What if my lymph nodes grow?

  3. Can people live long with CLL?

My questions

12Sources

  1. National Cancer Institute (NCI). Chronic Lymphocytic Leukemia Treatment (PDQ®) – Patient Version
  2. NHS. Chronic lymphocytic leukaemia
  3. MedlinePlus (U.S. National Library of Medicine). Leukemia
  4. National Cancer Institute (NCI). Infection and Neutropenia during Cancer Treatment
  5. National Cancer Institute (NCI). Common Cancer Myths and Misconceptions
  6. American Cancer Society. Typical Treatment of Acute Myeloid Leukemia (Except APL)
  7. MedlinePlus (U.S. National Library of Medicine). How to Understand Your Lab Results
  8. NHS. Chemotherapy
  9. World Health Organization (WHO). Sepsis — fact sheet
  10. National Cancer Institute (NCI). Recurrent Cancer: When Cancer Comes Back
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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