Leukaemia - lymphocytic, chronic

About chronic lymphocytic leukaemia

The term leukaemia refers to a group of cancers of your white blood cells and bone marrow. Bone marrow produces white blood cells and there are two types – lymphocytes and myeloid cells. Usually, these divide in a controlled way and help your body to get rid of infections. If you have leukaemia, your white blood cells start to divide and grow in an uncontrolled way, and don’t develop properly.

Leukaemia can be described as either acute (growing rapidly) or chronic (growing slowly). Chronic leukaemia is divided into two main types – CLL and chronic myeloid leukaemia (CML). This factsheet focuses on CLL.

In CLL, your bone marrow produces abnormal lymphocytes, which are unable to function properly. They also build up in your bone marrow, meaning it may not be able to make enough of other types of blood cell.

Between 2,000 and 3,000 people are diagnosed with CLL each year. It tends to affect people over the age of 60 and is rare in people under 40.

Symptoms of chronic lymphocytic leukaemia

Many people don’t have any symptoms and CLL is only picked up when they have a blood test for something else. If you do have symptoms, they may include:

  • feeling very tired and breathless
  • swollen lymph nodes (glands in your neck, groin and under your arms)
  • fever and sweating at night
  • weight loss
  • pain or discomfort in your abdomen (tummy)
  • increased bruising or unusual bleeding, such as frequent nosebleeds
  • frequent infections, which take longer to recover from

These symptoms aren’t always caused by CLL, but if you have them, see your GP.

Causes of chronic lymphocytic leukaemia

The exact reasons why you may develop CLL aren’t fully understood at present. However, experts do know that there are several things that increase your risk of developing it. These include:

  • age – CLL is most common in people over 60
  • being male – you’re twice as likely to develop CLL if you’re a man
  • ethnicity – you’re more likely to get CLL if you’re white
  • other people in your family having had CLL

Diagnosis of chronic lymphocytic leukaemia

Your GP will ask about your symptoms and examine you, and may ask you to have a blood test to check the levels of different cells in your blood. If your GP thinks that you may have CLL, he or she will refer you to a haematologist (a doctor who specialises in conditions of the blood).

Your haematologist will carry out some further investigations to confirm whether or not you have CLL. These may include:

  • further blood tests
  • a physical examination to check whether your spleen, lymph nodes or liver are enlarged

If these tests show that you have CLL, you may have one or more of the following tests to see how far your leukaemia has progressed. This will also help to determine which treatment is best for you.

  • Blood tests may be done to look at the genetic make-up of your leukaemia cells.
  • A bone marrow biopsy in which your doctor uses a needle to remove a sample of your bone marrow, which will be examined under a microscope. However, this test isn’t usually necessary.
  • The leukaemia cells may be tested more specifically to confirm exactly what type they are.
  • A CT scan of your whole body can look more accurately for enlargement of your lymph nodes and spleen.
  • You may have a chest X-ray to check that your lungs are working properly – if you have had a CT scan, you’re unlikely to need this.

Staging for chronic lymphocytic leukaemia

You may hear your doctors referring to stages of cancer. These stages measure how far your leukaemia has progressed so that you receive the most appropriate treatment. There are two methods – the Binet system and the Rai system. The Rai system is commonly used in the US. In the UK and the rest of Europe, the Binet staging system is generally used. With this system, CLL is classified according to how many groups of lymph nodes are affected.

Binet stage A

If you have stage A, you will have an increased number of lymphocytes in your blood, but a normal level of the other blood cells. There will be fewer than three areas of enlarged lymph nodes in your body. You probably won’t need treatment if you have stage A CLL.

Binet stage B

This is when you have a high number of lymphocytes and three or more areas of enlarged lymph nodes in your body. Whether or not you have any symptoms, such as tiredness, varies from person to person.

Binet stage C

At this stage, as well as having three or more groups of lymph nodes that are affected and a high number of lymphocytes, you will also have a low level of red blood cells (anaemia) or platelets (thrombocytopenia), or both. It’s possible that your lymph nodes and spleen may be swollen and you’re more likely to have other symptoms, for example, weight loss, tiredness and unusual bleeding such as nosebleeds.

Transformation

Sometimes, CLL can change (transform) into a lymphoma (cancer of your lymphatic system) called Richter’s syndrome. This happens in about five in 100 people with advanced CLL.

Treatment of chronic lymphocytic leukaemia

If you’re diagnosed with stage A CLL and don’t have any symptoms, you’re unlikely to need any treatment at first. However, your doctor will want to check your blood count regularly to monitor the progress of your condition. CLL develops very slowly so it’s possible that you will never require any treatment. 

You may be offered one or more of the following treatments if your condition becomes more severe, or if you start to have more symptoms. The aim of treatment is to reduce the number of CLL cells in your blood so that you don’t have any symptoms. This is called remission. Remission can last for a number of years, and you can have more treatment if your cancer starts to grow again.

Treatment is also aimed at reducing symptoms, such as weight loss and night sweats, and to reduce the size of any enlarged lymph nodes that are causing problems. 

Chemotherapy

Chemotherapy uses medicines to destroy cancer cells in your bone marrow. This is the main treatment used for stages B and C of CLL. The medicines you have will vary from person to person depending on your general health and the stage and type of CLL you have. You may take these as tablets or be given them through a drip into a vein in your arm.

Steroids

Your doctor may prescribe you steroids to take on their own, or at the same time as chemotherapy. They can be effective at treating anaemia and thrombocytopenia caused by CLL, as well as relieving sickness caused by chemotherapy.

You may take steroids as tablets or receive them through a drip into your vein. Steroids can cause some side-effects including heartburn and muscle weakness.

Radiotherapy

Radiotherapy uses high-energy rays (usually X-rays) to target cancer cells. It’s not usually used to treat CLL but you may have it if you have an enlarged spleen or lymph nodes that are causing you problems.

Biological therapies

Biological therapies are medicines that are designed to copy or disrupt your natural body substances to help fight cancer cells. Rituximab and alemtuzumab are both a type of biological therapy, known as monoclonal antibodies, which are used in the treatment of CLL. They work by finding and then destroying CLL cells in your bone marrow. You may be given these medicines alongside chemotherapy or after your chemotherapy is over. 

Bone marrow (stem cell) transplant

This is when you have a transplant of healthy bone marrow or stem cells from somebody else (preferably a brother or sister) into your body. This isn’t used very often at the moment and it can cause serious side-effects. However, you may be offered a bone marrow (stem cell) transplant if you’re young and in good health.

New treatments

Many possible new treatments for CLL are being tested in clinical trials all the time. These include new chemotherapy medicines and biological therapies, as well as different types of transplants. You may be able to take part in a clinical trial to test one of these new treatments – speak to your doctor for more information.

How will I know if my chemotherapy is working to treat chronic lymphocytic leukaemia?

Answer

You will have regular checks to see how well your chemotherapy is working.

Explanation

Your doctor will monitor your general health and examine you regularly for signs of a reduction in any swelling of your lymph glands and your spleen. You will have your blood tested to check the levels of the different cell types – this is to make sure that your treatment is reducing the number of chronic lymphocytic leukaemia (CLL) cells without causing too much reduction in the other cells in your blood. Your doctor will also monitor how well your liver and kidneys are working.

Ask your doctor or nurse for more advice about what you can expect during chemotherapy.

Will my treatment for chronic lymphocytic leukaemia make my hair fall out?

Answer

This depends on the type and dose of the treatment you have.

Explanation

Most of the treatments used for CLL do not lead to severe hair loss, although this may happen if you have high-dose chemotherapy. The more commonly used treatments don't usually cause complete hair loss but it may get thinner. You’re more likely to lose your hair if you’re taking combined medicines.

Your doctor or chemotherapy nurse will be able to tell you what to expect from your treatment.

How can I donate bone marrow?

Answer

You can join the British Bone Marrow Registry by registering with the National Blood Transfusion Service or the Anthony Nolan Trust.

Explanation

To register as a donor, you need to be between the ages of 18 and 49. Once registered, you will be asked to give a sample of blood, which is held on file. The service will contact you if you match someone who needs bone marrow or stem cells.

If you’re found to match someone who needs a bone marrow transplant, you can donate in one of two ways. The most common is to have stem cells taken from your blood using a machine that separates them from the rest of your blood. The other method involves removing stem cells from the bone marrow in your hip bone. This is done under general anaesthetic and you will need to stay in hospital for a couple of days.