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Chronic lymphocytic leukaemia (CLL) is a specific type of leukaemia which affects the B lymphocytes (a type of white blood cell). It is a slowly progressing leukaemia.
Blood cells are formed in the bone marrow, which is the spongy tissue found inside bones. Blood-forming stem cells divide to produce either more stem cells or immature cells that become mature blood cells over time. A blood stem cell may become a myeloid stem cell or a lymphoid stem cell. In CLL it affects the lymphoid stem cells.
A lymphoid stem cell becomes a lymphoblast cell and then one of three types of lymphocytes (white blood cells):
In CLL the bone marrow produces too many B lymphocytes which are not fully developed (immature). These cells fill up the bone marrow, preventing it from producing normal, healthy cells.
CLL progresses slowly but, although it can be treated, it is not usually possible to cure chronic leukaemia with standard treatments.
In most cases of CLL there is no obvious cause but it is important to understand that:
Many patients with CLL have no symptoms at the time they are diagnosed. Their CLL is discovered following a blood test as part of a routine check-up or for another condition.
There are no specific signs or symptoms which would allow a diagnosis of CLL to be made. The most common signs and symptoms are caused by the bone marrow being unable to produce enough normal blood cells.
Other signs and symptoms which may occur include:
CLL is often a chance finding during when a blood sample has been taken for another condition or as part of a routine check-up. Most patients with CLL will have bone marrow samples taken to confirm the diagnosis and to help to determine exactly what type of leukaemia a patient has. A bone marrow sample may not be necessary if treatment is not being started, but it is often valuable to have an initial sample to compare with later samples. More specialised tests are often done at the same time.
Usually, a chest x-ray will be taken and also scans, to look for swollen lymph nodes, or other affected sites. Blood samples will be taken to test for any problems with the liver, kidneys or other organs. Some blood tests and scans will be repeated to check for the response to treatment and any complications. Other tests are usually only done at diagnosis.
Other tests which may be done include:
Blood tests and bone marrow samples may be repeated during treatment to monitor response.
Occasionally, it may not be clear whether the diagnosis is CLL or another condition called small lymphocytic leukaemia (SLL) as they are very similar in presentation and the diagnosis may even change. This is not a cause for concern because the two diseases are treated in the same way.
CLL is the only form of leukaemia in which staging is routinely used. There are two staging systems called the Rai and Binet systems. In the Rai system (mainly used in America) there are five stages from I to IV, with IV being the most advanced. The Binet system is most common in Europe; it runs from A to C, with C being the most advanced stage. The staging systems may be used in treatment planning.
Many patients with CLL do not need to start treatment immediately after diagnosis. If patients are not being treated they have regular check-ups. This is known as “watch and wait” or “active monitoring”. There are clear criteria for when treatment should be started. This is done when there is evidence of progression or when symptoms are causing distress.
CLL is not considered curable with standard treatments; with the possible exception of stem cell transplants in a small number of younger and/or fitter patients. Even though it is not curable, many patients with CLL will have a long survival.
The main ways in which CLL is treated are:
Chemotherapy is the use of cell-killing drugs. These kill the cancer cells and/or stop them from dividing. Chemotherapy is usually given in blocks or ‘cycles’ of treatment. One cycle of treatment will consist of a series of doses of chemotherapy followed by a break for the healthy cells to recover.
Chemotherapy is normally given as a combination of drugs. Some patients with early stage disease may be treated with a single drug. The details of treatment will vary depending on the stage of the CLL, age and general fitness. Patients will be given a chance to discuss treatment options and detailed information on the treatment plan before it starts. The side effects of treatment vary between different types of treatment and different patients.
Patients will be given detailed information about any likely side effects before treatment starts.
We understand going through a blood cancer through journey can be difficult. It may help to talk to a close friend or relative about how you are feeling. Here are some questions that may be useful to ask your doctor.