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Chronic lymphocytic leukaemia (CLL)

Published by Bupa's health information team, March 2009.

This factsheet is for people who have chronic lymphocytic leukaemia (CLL), or who would like information about it.

Chronic leukaemia is a cancer of the blood that develops slowly. There are two main types of chronic leukaemia, depending on the type of cells affected: chronic lymphocytic leukaemia (CLL) or chronic myeloid leukaemia (CML).

About CLL
Symptoms of CLL
Causes of CLL
Diagnosis of CLL
Treatment of CLL
Living with CLL
Further information
Questions and answers
Related topics
Sources

About CLL

According to Cancer Research UK, about 2,400 people are diagnosed with CLL each year. CLL tends to affect people who are between 65 and 70 and is rare in people under 40.

The term leukaemia refers to a group of cancers of the blood cells. In leukaemia, white blood cells become abnormal and divide and grow in an uncontrolled way. Leukaemia is described as acute (growing rapidly) or chronic (growing slowly). Chronic leukaemia is divided into two main types - chronic lymphocytic leukaemia (CLL) or chronic myeloid leukaemia (CML). This factsheet focuses on chronic lymphocytic leukaemia (CLL).

The bone marrow produces two main types of white blood cells - lymphoid and myeloid - which work together to fight off infections. In CLL, there are abnormal stem cells in your bone marrow, which mature into slightly abnormal lymphocytes in the bloodstream that don't work properly and live longer than normal lymphocytes. CLL is the most common type of leukaemia.

Symptoms of CLL

The symptoms of CLL are due to a lack of healthy white blood cells, red blood cells and platelets, or to increase of lymphocytes in organs such as the spleen, liver or lymph nodes.

However, many people with CLL will never have any symptoms as a result of their condition.

Symptoms of CLL may include:

feeling very tired and breathless
fever
swollen lymph glands (glands in the neck, groin and under the arms)
pain or discomfort in the tummy (abdominal pain), due to an enlarged spleen
increased bruising
unusual bleeding (eg frequent nosebleeds, heavy periods in women, bleeding from gums and cuts)
having frequent infections that don't get better
losing weight unintentionally
bone pain

These symptoms aren't always due to CLL but if you have them, you should visit your GP.

Causes of CLL

These factors have been linked to developing CLL.

Age - the risk of developing CLL increases with age, and it is most common in people over 60.
Gender - men are twice as likely as women to develop CLL.
Genetics - CLL is more likely if other members of your family have had it.

Diagnosis of CLL

Diagnosis, investigation, treatment and follow-up for people with chronic lymphocytic leukaemia usually take place at specialist centres in hospitals.

You may be referred to a doctor, called a haematologist, who specialises in the treatment of blood disorders. Tests that are often carried out to investigate CLL include:

a blood test
a physical examination to check whether the spleen, lymph nodes or liver are enlarged
removal of a sample of bone marrow for analysis under a microscope - this is done under local anaesthetic and the bone marrow sample is taken from your hipbone (pelvis) or breastbone (sternum)
specific tests on the lymphocytes to determine their exact nature (immunophenotyping)
genetic analysis of the chromosomes in the lymphocytes (cytogenetics)

Other tests that your doctor may carry out include:

CT (computerised tomography) scans
chest X-ray
tissue typing - this will only be done if your doctor recommends having a bone marrow transplant; for more information see Related topics.

These tests are all very important because they help determine which treatment is best for you.

Staging for CLL

Doctors use a system called staging to measure how far the leukaemia has progressed. It can be very difficult to stage or classify CLL. The Binet staging system is generally used in the UK and the rest of Europe.

Binet stage A

If you have stage A CLL, you will have a large number of white blood cells in your body (high white blood cell count). There will be less than three areas of enlarged lymph nodes in your body. The lymph nodes contain the cells of your body which usually fight infection and are found in your armpits, chest, neck and groin. CLL at stage A may not need to be treated.

Binet stage B

This is when you have a high white blood cell count and three or more areas of enlarged lymph nodes in your body.

Binet stage C

At this stage, you will have a high white blood cell count and either a low red blood cell count or low platelet count, or both. You will have enlarged lymph nodes and your spleen may also be bigger than usual. You may be able to feel your enlarged spleen to the left of your stomach under your ribs.

Between three and five in every 10 people who get CLL have certain genetic differences which cause the leukaemia to develop slowly. You may be tested to find out if you have these differences which affect how CLL develops.

Treatment of CLL

If you have been diagnosed with CLL but have no symptoms, you may not need any treatment but may need to go to the hospital for regular check-ups. The treatment options depend on the stage of CLL you have. CLL is not a curable disease but a number of treatments are available which can keep it under control if necessary, and also help reduce its complications.

Chemotherapy

Chemotherapy using medicines such as chlorambucil or fludarabine is usually the first and main treatment used to destroy the abnormal white blood cells in CLL. These medicines are taken by mouth. Your doctor will give you advice about the side-effects of your specific chemotherapy medicines, and may prescribe other medicines to help reduce any side-effects.

Steroids

Steroid medicines may be prescribed at the same time as chemotherapy. They can reduce the side-effects of chemotherapy as well as treating CLL. Examples of these medicines include prednisolone and dexamethasone. These do have side-effects including digestive problems such as heartburn, and muscle weakness. Your doctor will give you further advice.

Monoclonal antibodies

Certain cancers may also respond to treatment with monoclonal antibodies. Antibodies are molecules that are made naturally by our immune systems. Their role is to seek out foreign cells and kill them. Monoclonal antibodies (eg alemtuzumab) can be made in a laboratory and be designed to seek out particular cells. These can bind to the CLL cells and destroy them.

Immunoglobulin

People with CLL may have a defect in their ability to produce antibodies (immunoglobulins) to fight infections, and this problem can sometimes be helped by the regular monthly infusion of normal human immunoglobulin by drip.

Radiotherapy

Radiotherapy may occasionally be used to treat enlarged lymph nodes or spleen.

New treatments

Younger people with CLL may be advised to have a bone marrow or stem cell transplant but there is no evidence yet about how helpful this is at treating CLL. A bone marrow transplant involves healthy bone marrow - either from another person (normally a close relative) or from your own bones - given through a drip. High doses of chemotherapy and sometimes radiotherapy are given before the transplant to destroy all the bone marrow, both abnormal and normal. This improves the chance of completely curing the leukaemia.

A peripheral stem cell transplant involves transplanting stem cells, rather than bone marrow cells. Stem cells can be collected (harvested) from your own blood or from another person and fed into your bloodstream through a drip.

Living with CLL

If you have CLL, whether or not you require treatment, you will have regular check ups with your doctor as often as is necessary.

Being diagnosed with cancer can be distressing for you and your family. Specialist cancer doctors and nurses are experts in providing the care and support you need. There may be support groups so you can meet people who may have similar experiences to you. Ask your doctor for advice.

Further information

Macmillan Cancer Support
0808 800 1234
www.macmillan.org.uk
Cancer Research UK
0808 800 4040
www.cancerresearch.org.uk
Leukaemia CARE
0800 169 6680
www.leukaemiacare.org.uk
Leukaemia Research
020 7405 0101
www.lrf.org.uk