Chronic lymphocytic leukaemia
Chronic lymphocytic leukaemia
Overview
- What is chronic lymphocytic leukaemia (CLL)?
- Symptoms of chronic lymphocytic leukaemia (CLL)
- Causes and risk factors of chronic lymphocytic leukaemia (CLL)
- Diagnosing chronic lymphocytic leukaemia (CLL)
- Stages of chronic lymphocytic leukaemia (CLL)
- Treatment for chronic lymphocytic leukaemia (CLL)
- Living with chronic lymphocytic leukaemia (CLL)
What is chronic lymphocytic leukaemia (CLL)?
Chronic lymphocytic leukaemia (also called CLL or CLL leukaemia) is the most common type of leukaemia. About 3,800 people in the UK are diagnosed with CLL each year. It’s more common in older people.
Macmillan Cancer Support have information on other types of leukaemia.
How does CLL develop?
Blood cells are made in the bone marrow. The bone marrow is a spongy material in the middle of your bones.
All blood cells are made from blood stem cells. These are blood cells at the earliest stage of their development. The new, developing blood cells are called blast cells.
There are 2 types of blood stem cell:
- lymphoid stem cells – make a type of white blood cell called lymphocytes
- myeloid stem cells – make all the other types of blood cell, including red blood cells, platelets, and other types of white blood cells, like neutrophils
CLL is a cancer of the white blood cells, which develop from B lymphocytes.
In people with CLL, the bone marrow makes too many abnormal white blood cells, called lymphocytes. These cells look normal under a microscope. But they’re not fully developed (immature) and don’t work properly.
Over time, these abnormal lymphocytes build up in the lymphatic system and may cause large, swollen lymph nodes. The abnormal lymphocytes can also build up in the bone marrow. This leaves less space for normal white blood cells, red blood cells and platelets to develop.
CLL usually develops very slowly, which is why it is called a chronic leukaemia. Many people with CLL don’t need treatment for months or years. If you have symptoms, you may need treatment sooner.
What are lymphocytes?
Lymphocytes are a type of white blood cell. They move around the body in the blood and the lymphatic system.
Lymphocytes are an important part of the body’s defence. They fight against germs like bacteria, fungal infections and viruses. They do this by:
- killing germs directly
- making special proteins called antibodies that 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
Small lymphocytic lymphoma
In many people with CLL, the leukaemia cells are mainly in the bloodstream and the bone marrow.
If the leukaemia cells are mainly in the lymph nodes, the disease is called small lymphocytic lymphoma (SLL).
CLL and SLL are now considered to be the same disease and are treated in the same way.
Common Symptoms
⚠️ This symptom list is for educational purposes. Having these symptoms does not mean you have this condition. See a doctor for proper diagnosis.
Medicines Commonly Used
⚠️ These medicines are commonly used for confirmed diagnoses of this condition. This is NOT a recommendation or prescription. Treatment must be determined by your doctor.
No medicines have been linked to this condition yet.
Causes
Causes and risk factors of chronic lymphocytic leukaemia (CLL)
Doctors don't yet know exactly what causes CLL, but research is ongoing to learn more about it.
Certain risk factors can raise the chance of developing it. These are explained below.
Age
The risk of developing CLL rises with age. Most people diagnosed with CLL are over 60. It's rare in people under 40.
Sex
CLL is more common in men than in women.
Family history
Most people with CLL have no family history of it. But studies show your risk of developing CLL is higher if a close relative has it. A close relative means a parent, sibling, or child. If anyone else in your family has CLL, it's important to tell your specialist.
Most people who have a relative with CLL will never develop it themselves.
CLL is not infectious and cannot be passed on to other people.
Ethnicity
CLL is most common in people of European origin.
Diagnosis
CLL is often picked up during a routine blood test, sometimes before you've noticed any symptoms at all.
You may be given the following blood tests.
Immunophenotyping
Immunophenotyping checks your blood for the presence of CLL cells.
Cytogenetic testing
Cytogenetic testing looks closely at all the chromosomes inside the leukaemia cells.
Fluorescent in situ hybridisation (FISH) testing
Fluorescent in situ hybridisation, or FISH, is an important cytogenetic test. It looks for a small number of specific changes in genes or chromosomes within the CLL cells.
Immunoglobulin testing
Immunoglobulin testing checks how much antibody you have in your blood to fight off infection.
Direct Coombs test
The direct Coombs test checks whether the CLL cells are producing antibodies that could damage your red blood cells.
Further tests
You may also need some further tests.
Chest X-ray
A chest X-ray gives a picture of your chest so your doctor can check your lungs and heart. It also shows the lymph nodes in your chest.
CT scan
A CT scan takes a series of X-rays that are combined to build a 3D picture of the inside of your body. It's sometimes used to see how many lymph nodes are affected by CLL, and can also show whether your spleen has become enlarged.
Bone marrow biopsy
You may need a bone marrow biopsy, which checks how much CLL is present in your bone marrow.
Lymph node biopsy
A lymph node biopsy isn't usually needed, but some people with CLL may have one.
People with small lymphocytic leukaemia may also need this test. Your cancer doctor or specialist nurse can talk you through whether it's the right step for your situation.
For this test, an enlarged lymph node, or a small part of one, is removed so it can be examined under a microscope. It can be done under local or general anaesthetic, and it's a small operation, so most people are able to go home the same day.
Afterwards, you're left with a small wound closed with a few stitches, which are usually removed after 7 to 10 days.
Stages of chronic lymphocytic leukaemia (CLL)
Doctors use staging to work out how much leukaemia is present in the body. This helps them understand when treatment might be needed, and which treatment would suit your situation best.
Macmillan Cancer Support have more information about staging of CLL.
Treatment
Treatment for chronic lymphocytic leukaemia (CLL)
A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).
Your cancer doctor or specialist nurse will explain the different treatment options and their side effects. They’ll also talk to you about certain things to think about when making treatment decisions.
Only a small number of people with CLL need to start treatment straight away. Doctors usually wait until there are signs the CLL is progressing before suggesting you have treatment. This is called monitoring (watch and wait).
Most people who do need treatment are treated with:
- targeted therapy – are a kind of drug therapy used to find and attack leukaemia cells
- chemotherapy – uses anti-cancer (cytotoxic) drugs to destroy or damage leukaemia cells
Macmillan Cancer Support has more information about treatment for CLL.
Other treatments
The following treatments are sometimes used.
Supportive therapy
You may have supportive therapy to help control any symptoms caused by CLL, like infections or anaemia.
Donor stem cell transplant
Doctors may suggest a donor cell transplant if the CLL hasn’t responded to other treatments or if it’s a type of CLL that’s unlikely to respond.
Radiotherapy
Radiotherapy is only used in certain situations. For example, you may have it if you have enlarged lymph nodes or an enlarged spleen.
Surgery
Surgery is occasionally used to remove an enlarged spleen (splenectomy).
Complications
Living with chronic lymphocytic leukaemia (CLL)
CLL often progresses very slowly. This means that people with CLL can live with it 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 to have regular check-ups and blood tests. You may attend the hospital for these, or they may be done by your GP.
If you have any problems or notice any new symptoms, tell your doctor as soon as possible. Don’t wait until your next appointment.
Wellbeing
You may want to find out more about having a healthier lifestyle. This’ll help you stay as well as possible.
Some examples of having a healthy lifestyle include:
- having a well-balanced diet
- being physically active
- reducing stress
- being involved in your healthcare
There are many benefits of having a healthy lifestyle. It doesn’t have to be difficult or expensive.
You could try going for a daily walk or doing some exercises at home. This will improve your health and wellbeing, and lower your risk of getting other illnesses and some cancers.
When planning changes, you need to consider 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 can help you talk to your doctors and nurses about your treatment, tests and check-ups. It can also help you be involved in making decisions. This can make you feel more confident and give you back a feeling of control.
Get involved in your healthcare
Getting involved in your healthcare includes taking your medicines as prescribed and always going to your hospital appointments.
If you have any problems or notice any new symptoms between appointments that don’t go away within a couple of weeks, tell your doctor as soon as possible.
Self-help and support groups
Talking about your feelings can help reduce stress, anxiety and isolation.
Self-help or support groups offer a chance to talk to other people who may be in a similar situation and facing the same challenges as you.
Online support
If you’re affected by leukaemia, there are:
- online support groups
- social networking sites
- forums
- chat rooms
- blogs
You can use these to ask questions and share your experience.
Getting support
Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.
There are also organisations that offer information and support.
Anthony Nolan
Anthony Nolan is the UK’s largest stem cell and bone marrow register.
Chronic Lymphocytic Leukaemia Support Association
The Chronic Lymphocytic Leukaemia Support Association supports CLL patients, their families and their carers. This is through education and access to reliable, relevant and current information.
Blood Cancer UK
Blood Cancer UK is a blood cancer research charity. It provides information and support on any type of blood cancer.
Macmillan Cancer Support
Macmillan Cancer Support also has further information to support you. You can:
- phone the Macmillan Support Line on 0808 808 00 00
- chat to Macmillan specialists online
- use the Macmillan CLL, SLL, HCL forum – you can talk to others affected by CLL, SLL or HCL, ask questions and share your experience
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