Chronic lymphocytic leukaemia

Your blood cells are made in the bone marrow, the spongy material in the middle of your bones. All of them start out as blood stem cells, which are blood cells at the earliest stage of their development. The new, developing cells are called blast cells.

There are 2 types of blood stem cell:

• lymphoid stem cells, which make a type of white blood cell called lymphocytes
• myeloid stem cells, which make all the other types of blood cell, including red blood cells, platelets, and other types of white blood cells, like neutrophils

Chronic lymphocytic leukaemia (CLL) is a cancer of the white blood cells, which develop from B lymphocytes.

If you have CLL, your bone marrow makes too many abnormal white blood cells, called lymphocytes. Under a microscope these cells look normal. But they're not fully developed (immature) and they don't work properly.

Over time, the abnormal lymphocytes build up in the lymphatic system and may cause large, swollen lymph nodes. They can also build up in the bone marrow, and that leaves less space for normal white blood cells, red blood cells and platelets to develop.

CLL usually develops very slowly, which is why it's called a chronic leukaemia. Many people with CLL don't need treatment for months or years. If you have symptoms, though, you may need treatment sooner.

Lymphocytes are a type of white blood cell. They travel around the body in the blood and in the lymphatic system.

They're an important part of your body's defence, and they fight germs such as bacteria, fungal infections and viruses. They do this in three ways:

• killing germs directly
• making special proteins called antibodies, which stick to germs and make it easier for other white blood cells to find and kill them
• remembering and recognising germs (lymphocytes can live for a very long time, so they can quickly fight any infection you have had before)

In many people with chronic lymphocytic leukaemia (CLL), the leukaemia cells sit mainly in the bloodstream and the bone marrow. If the cells are found mostly in the lymph nodes instead, doctors call the disease small lymphocytic lymphoma (SLL). The two are now seen as the same disease, and they are treated in the same way.

Doctors don't yet know what causes chronic lymphocytic leukaemia (CLL), though research is still going on to learn more about it. Some things, called risk factors, can raise the chance of developing it. They are described here.

Chronic lymphocytic leukaemia (CLL) becomes more likely as you get older. Most people who are diagnosed with it are over 60, and it's rare in people under 40.

Most people with chronic lymphocytic leukaemia (CLL) have no family history of it. Studies do show, though, that your risk of developing CLL is higher if a close relative has it. A close relative means a parent, brother or sister, or child. If anyone else in your family has CLL, tell your specialist.

Most people who have a relative with CLL will never develop it themselves.

CLL is not infectious, so it can't be passed on to other people.

Chronic lymphocytic leukaemia (CLL) is often found after a routine blood test, and you may not have had any symptoms at all.

You may have the following blood tests.

Immunophenotyping is a test that looks for CLL cells in your blood.

Cytogenetic testing looks at all the chromosomes in the leukaemia cells of chronic lymphocytic leukaemia.

Fluorescent in situ hybridisation (FISH) testing is a cytogenetic test, and it matters in chronic lymphocytic leukaemia (CLL). Doctors use it to look for a small number of specific changes in the genes or chromosomes of the CLL cells.

Immunoglobulin testing is a blood test that checks the levels of antibodies in your blood. These are the proteins your body uses to fight infection.

The direct Coombs test checks whether the cells of chronic lymphocytic leukaemia (CLL) are making antibodies that can damage your red blood cells.

You may need some further tests as well.

A chest X-ray takes a picture of your chest so the doctor can check your lungs and heart. It also shows the lymph nodes in your chest, which can matter if you have chronic lymphocytic leukaemia.

A CT scan takes a series of x-rays and puts them together to build a 3D picture of the inside of your body. In chronic lymphocytic leukaemia (CLL), doctors sometimes use it to check how many lymph nodes are affected. It can also show whether your spleen is enlarged.

Your doctor may suggest a bone marrow biopsy if you have chronic lymphocytic leukaemia (CLL). The test checks how much CLL is in your bone marrow.

Most people with chronic lymphocytic leukaemia (CLL) won't need a lymph node biopsy, but some do. People with small lymphocytic leukaemia may also need one. Your cancer doctor or specialist nurse can tell you whether a biopsy is right for your situation.

In this procedure, an enlarged lymph node, or a small section of one, is removed so it can be looked at under a microscope. You may have it done under a local or a general anaesthetic. It's a small operation, and most people can go home on the same day.

Afterwards you'll have a small wound with a few stitches. These are usually taken out after 7 to 10 days.

These treatments are sometimes used for chronic lymphocytic leukaemia.

If you have chronic lymphocytic leukaemia (CLL), you may be given supportive therapy to help control the symptoms it causes, such as infections or anaemia.

Your doctor may suggest a donor cell transplant if chronic lymphocytic leukaemia (CLL) hasn't responded to other treatments, or if it's a type of CLL that's unlikely to respond to them.

Radiotherapy is used only in certain situations in chronic lymphocytic leukaemia. For example, your doctor may suggest it if you have enlarged lymph nodes or an enlarged spleen.

Surgery is only occasionally used in chronic lymphocytic leukaemia, to remove an enlarged spleen (splenectomy).

CLL often progresses very slowly, so many people live with chronic lymphocytic leukaemia for a long time. If you do need treatment, it's usually very effective and can keep the leukaemia under control for many years.

You'll need regular check-ups and blood tests. You may go to the hospital for these, or your doctor may do them.

If you have any problems or notice any new symptoms, tell your doctor as soon as possible. Don't wait until your next appointment.

You may want to find out more about living a healthier lifestyle with chronic lymphocytic leukaemia (CLL). It can help you stay as well as possible.

Some examples of a healthy lifestyle include:

• having a well-balanced diet
• being physically active
• reducing stress
• being involved in your healthcare

There are many benefits to living this way, and it doesn't have to be difficult or expensive.

You could try a daily walk or some exercises at home. This will improve your health and wellbeing, and lower your risk of getting other illnesses and some cancers.

When you plan changes, think about how the side effects of treatment might affect you. Try not to do too much, too soon.

Understanding more about CLL and its treatment can also help you cope. It makes it easier to talk to your doctors and nurses about your treatment, tests and check-ups. It can also help you take part in making decisions. This can make you feel more confident and give you back a feeling of control.

Being involved in your own care with chronic lymphocytic leukaemia means taking your medicines exactly as prescribed and never missing a hospital appointment.

Between appointments, you may have problems or notice new symptoms. If they don't go away within a couple of weeks, tell your doctor as soon as possible.