The information from this section has been sourced from the Leukaemia Foundation of Australia www.leukaemia.org.au and the CLL Global Research Foundation: www.cllglobal.org

What is CLL?

Chronic lymphocytic leukaemia (CLL) is a type of cancer that affects the blood and bone marrow. It is a chronic, or slow growing, form of leukaemia that occurs when the bone marrow produces too many white blood cells called lymphocytes. These lymphocytes are unable to function properly and live longer than normal healthy lymphocytes. They accumulate in the bone marrow, blood and lymph organs such as lymph nodes and the liver and spleen. As more lymphocytes are produced, they crowd the bone marrow, interfering with normal blood cell production. With more lymphocytes circulating in the blood and bone marrow, there is less room for healthy red and white blood cells and platelets, which can lead to anaemia, increased infections and problems with bleeding and bruising.

CLL usually develops slowly over many years and progresses slowly in the early stages of the disease.

What causes CLL?

The actual cause of CLL remains unknown. Research continues to uncover more information about the disease, such as certain genes that appear to be damaged in CLL. In some cases, a family history of the disease can be a risk factor for developing CLL. Continuing research, such as that planned by the CLLARC, aim to learn more about what causes CLL as well as improving treatment of the disease.

How common is CLL?

Chronic lymphocytic leukemia (CLL) is the most common type of adult leukemia in the western world. In Australia, approximately 718 people are diagnosed with CLL every year,* making it the most common type of leukaemia. However, it is still considered an uncommon form of cancer, accounting for approximately 0.8% of all cancers diagnosed.

* Source: Australian Institute of Health and Welfare and Australian Associated Cancer Registry (2004) Cancer in Australia 2001

Who gets CLL?

CLL impacts adults rather than children. The risk of developing CLL increases with age, with most (80%) new cases diagnosed in people over 60 years old. CLL is rarely seen in people under the age of 40 years. It tends to occur more frequently in men than in women.

What are the symptoms of CLL?

Most people do not experience any symptoms of CLL during the early stages of the disease. In fact, in many people CLL is only discovered during a routine blood test when high white blood cell counts are detected.  The blood count will usually need to be monitiored regularly, and for some it may remain stable for over a long time. 

Fatigue (tiredness) is one of the common complaints or symptoms of CLL.  Symptoms that are reported by people with progressive CLL include:

• Swollen lymph nodes (glands). These may firstly be noticed in the lymph glands found in the neck, under the arms or in the groin. The lymph glands swell because of the accumulation of white blood cells within them.
• Pain or discomfort under the ribs (on the left side). This is due to swelling of the spleen, another organ where the increased numbers of white blood cells accumulate.
• Anaemia. This may be detected by a blood test, or firstly suspected by symptoms of anaemia such as tiredness, paleness, dizziness, or shortness of breath during activity.
• Frequent infections. Due to a lack of healthy white blood cells (which normally protect the body against infections), people with CLL may experience frequent infections, slow recovery from infections, or slow healing of cuts and wounds.
• Increased/unexplained bruising and/or bleeding. The increase in white blood cells crowds out healthy platelets, which are the blood cells involved in regulating bleeding. With less platelets, people with CLL tend to bruise more easily and have unexplained bleeds e.g. nose bleeds.
• Excessive sweating at night.
• Unintentional weight loss.

How is CLL diagnosed?

Until about 15 years ago, most patients were only diagnosed with CLL once some of the symptoms became noticeable. Today, most people have more regular blood tests as part of a routine check up or for other medical conditions, so the chances of “accidentally” detecting early stage CLL via a blood test is more likely. The blood test shows a high lymphocyte (white blood cell) level.  A special laboratory test called "immunophenotyping" is usually able to make the diagnosis from the blood.  A bone marrow biopsy may be performed in certain situations or prior to treatment if this is needed.   

How is CLL treated?

Almost all patients with early and stable CLL do NOT require any treatment.   As CLL is usually a slow growing disease,  this situation where treatment is not needed may continue for a long time, as they are not experiencing any symptoms and the disease is not adversely affecting their health or their lives. In this setting, the doctor will regularly monitor the person with blood tests and check on their symptoms. For many people with CLL,  it may be many years before treatment is needed, and in some it may never be needed at all.

Currently there is no cure for CLL.  However, treatment aims to relieve the symptoms and problems of the disease and is usually started if there is clear disease progression. The type of treatments used will vary depending on the stage of disease or whether it is the first treatment or treatment for relapsed disease. Treatment for CLL is evolving over time, as new drugs become available and clinical trials continue to help doctors learn more about the best available therapy for each stage of the disease.

Once symptoms of CLL develop and blood tests show the disease is progressing, treatment will usually be commenced. Treatment may involve one or a combination of the following:

• Chemotherapy. This is the most common form of treatment.  It may be in oral tablet form,  or as an intravenous (administered via a needle passing into a vein). 
• Steroids.
• Monoclonal antibodies. This is a type of drug that directly targets a certain type of lymphocyte (B-cell lymphocyte) without harming other cells in the body. MabThera® (rituximab) is an example of a monoclonal antibody.
• Stem Cell Transplant. This form of treatment is only occasionally appropriate to people who have CLL. It may be as a transplant from the patient themselves, using bone marrow or blood taken from them during a previous remission stage. Alternatively, a transplant may be given from a donor who has matching blood characteristics to the person receiving the stem cell transplant.

For more information on CLL contact the Leukaemia Foundation of Australia:
Freecall: 1800 620 420
Email:  This e-mail address is being protected from spam bots, you need JavaScript enabled to view it  

Mail:  GPO Box 9954 In your capital city

You may also download the LFA information book on CLL: http://www.leukaemia.org.au/web/resources/pdf/booklet_cll.pdf