Chronic lymphocytic leukaemia
Chronic lymphocytic leukaemia (CLL) is a type of slow-growing leukaemia that affects B-lymphocytes. B-lymphocytes are white blood cells that produce antibodies to fight infections. With CLL, the cells become cancerous.
Causes of chronic lymphocytic leukaemia
The cause of CLL is unknown and there are no clear risk factors. In very rare cases, it may result from an inherited faulty gene, passed down from a parent.
CLL usually develops slowly over many months or years. Up to half of people with CLL will never need treatment. Other people may need to be treated soon after they are diagnosed.
Symptoms of chronic lymphocytic leukaemia
Many people who have CLL do not have any symptoms.
Possible symptoms include:
- swollen glands, usually in your neck or under your arms
- losing weight without trying
- night sweats
- fever with no obvious cause
- repeated infections, or having infections often
- tiredness (fatigue)
- shortness of breath
- bleeding or bruising more easily
- stomach swelling or pain.
These symptoms can also be caused by many different conditions. Having them does not mean you have CLL. But it is important to get them checked by your healthcare provider.
Diagnosing chronic lymphocytic leukaemia
Your healthcare provider will ask you about your symptoms and examine you. They will check for swollen glands and feel your stomach for swelling of your liver or spleen.
You will need a blood test to look for abnormal blood cells.
You may also have:
- further blood tests
- a chest x-ray and CT scan
- a sample taken from a swollen gland (lymph node biopsy)
- a bone marrow biopsy where a sample is taken from inside your hip bone.
Results from these tests can show how advanced your CLL is and how likely it is to get worse. This is known as staging.
Treating chronic lymphocytic leukaemia
CLL cannot be cured but it is usually possible to control it.
Your treatment will depend on several things including:
- the stage of your CLL
- if you have symptoms
- your overall health
- your treatment preferences.
Active monitoring
If your CLL is not causing symptoms and does not show signs of getting worse, you may not need active treatment (30% to 50% of patients never need treatment). But you will have regular blood tests and checks with your healthcare provider. This is called active monitoring.
This is safe as studies have shown there is no advantage in giving treatments early in CLL. Treatments themselves can cause unwanted side effects and complications. There are also new treatments for CLL being developed, so you may have access to better options by waiting.
Active treatment
If your CLL is more advanced when it is first diagnosed, you will be referred to a doctor who specialises in blood disorders (a haematologist) for active treatment.
You will also be referred to a haematologist for active treatment if your active monitoring shows your CLL is getting worse. Things that show you might need treatment include:
- a change in your blood test results
- significant sweating at night
- significant weight loss
- bulky lymph nodes
- an enlarged spleen that is causing symptoms.
Treatment options
Treatment options include:
- chemotherapy
- immunotherapy
- targeted therapies — special medications that identify and attack specific cancer cells (they may be used on their own or with chemotherapy)
- corticosteroid therapy
- radiation treatment
- stem cell transplant (very rarely).
Not all treatments for CLL are funded.
Self care for chronic lymphocytic leukaemia
Living with CLL can be challenging but you can take steps to help you feel better and enjoy a high quality of life. Whether you are having treatment or are on active monitoring, the things you can do include:
- staying physically active — this can reduce fatigue and improve your quality of life and immune system function
- eating well — this can support your overall health and help manage fatigue
- getting enough sleep and rest
- staying positive and managing stress.
To help look after your mental wellbeing, talk with people who understand your experience with CLL — this can help you get the emotional support you need. Share how you are feeling with:
- whānau and friends
- your healthcare provider
- a support group.
To help manage fatigue you can try:
- pacing yourself
- being as active as possible
- eating well.
Protect your skin from the sun
With CCL, you are more at risk of other cancers, in particular skin cancers that can grow faster than usual.
- Use a high-SPF sunscreen several times a day and wear a broad-brimmed hat when outdoors, to protect against skin cancers.
- Get a skin check with your healthcare provider once a year.
- See your healthcare provider if you notice anything new on your skin.
- Keep up to date with other cancer screening programme appointments.
Reduce your risk of infections
- Wash and dry your hands thoroughly, especially before eating or preparing food, and after going to the toilet or touching pets — use warm soapy water.
- Avoid food-related infections by being careful when storing, preparing and cooking food.
Food for people with low immunity — Ministry for Primary Industriesexternal link
- Stay away from people who are sick, including whānau members and coworkers
- Talk to your healthcare provider about getting immunised against diseases such as influenza, COVID-19 and shingles.
Check which immunisations you can have
Keep up to date with recommended immunisations including:
If you are over the age of 60 you should consider an RSV vaccine. You will have to pay for this vaccine.
You should not have the measles, mumps and rubella (MMR) vaccine as this is a live vaccine and may cause an infection if you have CLL.