Chronic lymphocytic leukaemia information

Chronic lymphocytic leukaemia (CLL) is a cancer of the blood. The leukaemia is termed ‘chronic’ because it develops very slowly.

In this section

When a patient develops CLL the process of producing new blood cells is disrupted. The blood cells divide too quickly and are released into the blood before they are fully developed. This means that that they do not work properly. Eventually the abnormal cells outnumber and replace the normal blood cells.

Symptoms

The signs and symptoms of CLL vary from patient to patient but may include the following:

  • a feeling of exhaustion
  • pale skin
  • increased bruising of the skin
  • swollen lymph glands
  • night sweats
  • weight loss.

Many of these symptoms are caused by the increased numbers of abnormal blood cells and a decrease in the amount of normal blood cells in the blood stream and the bone marrow.

Diagnosis

A series of tests or investigations will be done to confirm or rule out a diagnosis of chronic lymphocytic leukaemia (CLL) and to check on your general health. These tests may include:

Bone marrow sample

In order to confirm what type of leukaemia you have and to plan your treatment, it is necessary to examine a small sample of bone marrow. This is normally taken from your hip bone and is examined to determine whether abnormal white blood cells are present and if so what type they are.

The process is conducted under local anaesthetic and is not painful, although some patients find it uncomfortable. The procedure will be explained to you before it is carried out and you will be able to ask any questions or raise any concerns you might have.

Lymph node biopsy

Your doctors may need to perform a lymph node biopsy in order to confirm your diagnosis. The enlarged node will be removed under local or general anaesthetic to allow cells from it to be examined under a microscope.

If you need to have this procedure, the process, its benefits and any outcomes will be explained to you before it is carried out.

Blood tests

Blood tests will be taken throughout your treatment to monitor how you are responding and how effective your treatment is.

At the diagnosis stage, blood samples will be taken to determine the exact type of CLL cells that are present and to determine the most appropriate form of treatment.

Treatment

Adult patients with a diagnosis of chronic lymphocytic leukaemia (CLL) require an intensive treatment plan. Your treatment plan will be fully explained to you by your consultant or clinical nurse specialist. It may take the form of chemotherapy given to you over a few cycles with the aim of controlling your leukaemia.

Chemotherapy

Chemotherapy means treatment with anti-cancer drugs, which destroy cells by damaging them so that they can't divide and grow. Normal cells recover quickly, the leukaemia cells do not. As the drugs circulate in the blood, they reach leukaemia cells all over the body.

The effects and side effects of the regime chosen for you will be explained by your consultant and clinical nurse specialist. Please ask any questions you have about the drugs and why they have been chosen.

Chemotherapy drugs may be given by mouth or intravenously.

You may receive your treatment as an outpatient or you may need to be admitted to hospital. Chemotherapy is normally given at intervals over several weeks or months. During this time you will have regular blood tests and bone marrow samples to monitor your progress.

Other drugs

There are other drugs used in the treatment of CLL. They are used in conjunction with chemotherapy. If these form part of your treatment, your consultant and clinical nurse specialist will explain why they are being given to you and what the benefits and side effects might be.

Stem cell transplant

You may be offered high-dose chemotherapy which is intensive treatment. In addition to destroying leukaemia cells, this treatment will also destroy healthy bone marrow cells. A peripheral stem cell transplant will give you a source of healthy bone marrow that will produce normal white blood cells. This may result in a complete cure of your leukaemia.

If a transplant forms part of your treatment, your doctors and nurses will explain the procedure in more detail and discuss the benefits and side effects with you.

After treatment

Having chronic lymphocytic leukaemia (CLL) and being treated for it will have an effect on your life.

Checkups

Treatment for CLL, as with other leukaemia, is very effective and can control the condition and the symptoms you experience for many years.

After your treatment is finished you will continue to be monitored with regular checkups and blood tests. If you notice new symptoms or have any concerns about your health between appointments, contact your doctor.

Sex and fertility

Some chemotherapy drugs can damage the ovary or testes, leading to an increased risk of infertility and, in women, early menopause.

Chemotherapy may affect sexual organs or functions in various ways. You may experience changes in your desires or desired level of sexual activity or you may notice no difference. Loss of libido (sex drive) is not uncommon in both women and men. However, chemotherapy in itself doesn’t usually affect sexual performance or cause impotence.

Fatigue

During your treatment you may start to feel tired and listless. This may be general fatigue or it may be that you become tired more easily after normal activities. This is quite normal and usually occurs with leukaemia and its treatments.

Do talk about how you are feeling with your consultant or clinical nurse specialist. They will be able to suggest ways of conserving your energy or may be able to treat the causes of your tiredness, such as not being able to sleep or anaemia.

If you are at home, try to plan your day so that light activities are spaced between more energetic activities. Do get enough rest and only do what you feel you can cope with.

People will often be willing to lend their support. If you get tired easily, limit your activities and conserve your energy for the things that mean the most to you. Ask your family and friends to help with household chores.