Chronic lymphocytic leukaemia

Chronic lymphocytic leukaemia | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Cancer Cancer types in adults Chronic lymphocytic leukaemia Chronic lymphocytic leukaemia About chronic lymphocytic leukaemia Diagnosing chronic lymphocytic leukaemia Treating chronic lymphocytic leukaemia Complications of chronic lymphocytic leukaemia Causes of chronic lymphocytic leukaemia About chronic lymphocytic leukaemia Chronic lymphocytic leukaemia is a type of cancer that affects the white blood cells and tends to progress slowly over many years. It mostly affects people over the age of 60 and is rare in people under 40.Children are almost never affected. In chronic lymphocytic leukaemia (CLL),the spongy material found inside some bones (bone marrow)produces too many white blood cells called lymphocytes thatarent fully developed and dont work properly. Over time this can cause a range of problems, such as an increased risk of picking up infections, persistent tiredness,swollen glandsin the neck, armpits or groin, and unusual bleeding or bruising. CLL is differentfrom other types of leukaemia, including chronic myeloid leukaemia , acute lymphoblastic leukaemia and acute myeloid leukaemia . Symptoms of CLL CLL doesnt usually cause any symptoms early on and may only be picked up during a blood test carried out for another reason. When symptoms develop, they may include: getting infectionsoften anaemia persistent tiredness, shortness of breath and pale skin bleeding and bruising more easily than normal a high temperature (fever) night sweats swollen glands in yourneck, armpits or groin swelling and discomfort in your tummy unintentional weight loss You should speak to your GP if you have any persistent or worrying symptoms. These symptoms can have other causes other than cancer, but its a good idea to get them checked out. Read more about diagnosing CLL and complications of CLL . Treatmentsfor CLL As CLLprogresses slowly and often has no symptoms at first, you may not need to be treated immediately. If its caught early on, youll have regular check-ups over the following months or yearsto see if its getting any worse. If CLLstarts to cause symptoms, or isnt diagnosed until later on, the main treatments are: chemotherapy  where medicationis taken as a tablet or given directly into a vein is used to destroy the cancerous cells a stem cell or bone marrow transplant  where donated cells called stem cells are transplanted into your body so you start to produce healthy white blood cells Treatment cantusually cureCLL completely, but can slow its progression and lead toperiods where there are no symptoms. Treatment may be repeated if the condition comes back. Read more about treating CLL . Outlook for CLL The outlook for CLL depends on how advanced it is when its diagnosed, how old you are when diagnosed, andyour general health. Younger, healthier people who are diagnosed whenCLL isstill in the early stages generally have the best outlook. Although it cant normally be cured, treatment can help control the condition for many years. Causes of CLL Its not clear what causes CLL. Theres no proven linkwith radiation or chemical exposure, diet or infections. You cant catch it from anyone else or pass it on. However, having certain genes can increase your chances of developing CLL. You may be at a slightly higher risk of it if you have a close family member with it, although this risk is still small. Diagnosing chronic lymphocytic leukaemia Most cases of chronic lymphocytic leukaemia (CLL) are detected during blood tests carried out for another reason. However, you should speak to your GP if you have worrying symptoms of CLL , such aspersistent tiredness, unusual bleeding or bruising, unexplained weight loss or night sweats. Your GP may: ask about your symptoms and your medical and family history carry out a physical examination to check for problems such as swollen glands and a swollen spleen send off a bloodsample for testing Ifyour GPthinks you could have CLL, youll be referred to a hospital doctor called a haematologist, a specialist in blood disorders, for further tests. Blood tests The main test used to help diagnose CLL is a type of blood test called a full blood count. This is where the number and appearance of the different blood cells in a sample of your blood are checked in a laboratory. An abnormally high number of unusual white blood cells(lymphocytes) can be a sign ofCLL. A detailed examination of these cells can usually confirm the diagnosis. X-rays and scans You may also have: a chest X-ray an ultrasound of your tummy a computerised tomography (CT) scan These tests can check for problems caused by CLL, such as swollen glandsora swollenspleen,and helprule out other possible causes of your symptoms. Bone marrow biopsy Sometimesthehaematologistmayrecommend removing a sample of your bone marrow(bone marrow biopsy) so they canexamine itunder a microscope to check it for cancerous cells. The sample is removedusinga needle inserted into your hip bone. Local anaesthetic is normally used tonumb the area where the needle is inserted, although you may experience some discomfort during the biopsy. The procedure willlast around 15 minutes and you shouldnt need to stay in hospital overnight. You mayhave some bruising and discomfort for a few days afterwards. Lymph node biopsy In some cases, removing and examining a swollen lymph gland can help confirm a diagnosis of CLL. This is known as a lymph node biopsy. The gland is removed during a minor operation carried out under either local or general anaesthetic , where youre asleep. You wont usually need to stay in hospital overnight. After the operation, youll be left with a small wound that will be closed with stitches. Genetic tests Tests may also be carried out on your blood and bone marrow samples to check for any unusual genes in the cancerous cells. Identifying unusual genes in these cells can help your doctors decide how soon you should start treatment and which treatment is best for you. Some treatments for CLL dont work as well in people with certain abnormal genes in the affected cells. Treating chronic lymphocytic leukaemia Treatment for chronic lymphocytic leukaemia (CLL) largely depends on what stage the condition is at when its diagnosed. You may just need to be monitored at firstif its caught early on. Chemotherapy is the main treatment if its more advanced. Treatment can often help keep CLL under control for manyyears. Itmay go away after treatment initially (known as remission), but will usually come back (relapse) a few months or years later and may need to be treated again. Stages of CLL Doctors use stages to describe how far CLL has developed and help them determine when it needs to be treated. There are 3 main stages of CLL: stage A you have enlarged lymphglands in fewer than 3 areas (such as your neck, armpit or groin) and a high white blood cell count stage B you have enlarged lymph glands in 3 or more areas and a high white blood cell count stage C you have enlarged lymphglands or an enlarged spleen, a high white blood cell count, and a low red blood cell or platelet count Stage B and C CLL are usually treated straight away. Stage A generally only needs to be treated if its getting worse quickly or starting to cause symptoms. Monitoring early-stage CLL Treatment may not be needed if you dont have any symptoms when youre diagnosed with CLL. This is because: CLLoften develops very slowly and may not cause symptoms formany years theres no benefit in starting treatment early treatment can cause significant side effects In these cases, you will normally just need regular visits to your doctor and blood tests to monitor the condition. Treatment with chemotherapy will usually only be recommended if you develop symptoms, or tests show that the condition is getting worse. Chemotherapy for more advanced CLL Many people with CLL will eventually need to have chemotherapy. This involves taking medication to keep the cancer under control. There are a number of different medicines for CLL, but most people will take 3 main medications in treatment cycles lasting 28 days. These medicines are: fludarabine usually taken as a tabletfor 3 to 5 days at the start of each treatment cycle cyclophosphamide  alsousually taken as a tabletfor 3 to 5 days at the start of each treatment cycle rituximab  giveninto a vein over the course ofa few hours (intravenous infusion) at thestart of each treatment cycle Fludarabine and cyclophosphamide can usually be taken at home. Rituximab is given in hospital, and sometimes you may need to stay in hospital overnight. A number of different medicines can also be tried if you cant have these medicines, youve tried them but they didnt work, or your CLL has come back after treatment. These include bendamustine, chlorambucil, ibrutinib, idelalisib, obinutuzumab, ofatumumab and prednisolone (a steroid medication ). Side effects of treatment The medicines used to treat CLL can cause some significant side effects, including: persistent tiredness feeling sick an increased risk of infections easy bruising or bleeding anaemia shortness of breath , weakness and pale skin hair loss or thinning an irregular heartbeat an allergic reaction Most side effects will pass once treatment stops. Let your care team know if you experience any side effects, asthere are some treatments that can help. Read more about the side effects of chemotherapy Stem cell or bone marrow transplants Stem cell or bone marrow transplants are sometimes used to try toget rid of CLL completely, or control it for longer periods. Stem cellsare cells produced by the spongy material found in the centre of some bones (bone marrow) that can turn into different types of blood cells, including white blood cells. A stem cell transplant involves: having high-dose chemotherapy and radiotherapy to destroythe cancerous cells in your body removing stem cells from the blood or bone marrowof a donor this will ideally be someone closely related to you, such as a sibling transplanting the donor stem cells directly into one of your veins Thisis the only potential cure for CLL,but its not done very oftenas its an intensive treatment and many people with CLL are older and not well enough for the benefits to outweigh the risks. The initial treatment with chemotherapy and radiotherapycan place a significant strain on your body and causetroublesome side effects. Theres also a risk of serious problems after the transplant, such as graft versus host disease. This is wherethe transplanted cells attack the other cells in your body. Other treatments for CLL There are also a number of other treatments that are sometimes used to help treat some of the problems caused by CLL, particularly if you cant have chemotherapy or it doesnt work. These include: radiotherapy toshrink enlarged lymph glands or a swollen spleen surgery to remove a swollen spleen antibiotics ,antifungals and antiviral medications to help reduce your risk of picking up an infection during treatment blood transfusions to provide more red blood cells andplatelets (clottingcells)if you experience severe anaemia or problems with bleeding and bruising immunoglobulin replacement therapy a transfusion ofantibodies taken from donated blood thatcan help prevent infections injections of medication calledgranulocyte-colony stimulating factor (G-CSF) to help boost the number of white blood cells You may also need additional treatment for any complications of CLL that develop. Deciding against treatment As many of the treatments for CLL can have unpleasant side effects that may affect your quality of life, you may decide against having a particular type of treatment. This is entirely your decision and your treatment team will respect any decision you make. You wont be rushed into deciding about your treatment, and before making a decision you can talk to your doctor, partner, family and friends. Pain relief and nursing care will still be available as and when you need it. Complications of chronic lymphocytic leukaemia Chronic lymphocytic leukaemia (CLL) can sometimes cause a number of further complications. Infections People with CLL usually have a weakened immune system and are more vulnerable to infectionsbecause they have a lack of healthy, infection-fighting white blood cells. Treatment with chemotherapy can also further weaken the immune system. If you have CLL, its a good idea to: report any possible symptoms of an infection to your GP or care team immediately  things to look out for include a high temperature (fever), aching muscles, diarrhoea or headaches ensure your vaccinations are up-to-date speak to your GP or care team for advice about any additional vaccines you might need, as some arent safe if you have a weak immune system avoid close contact with anyone who has an infection  even if its an infection to which you were previously immune, such as chickenpox You may also be prescribed regular doses of medications such as antibiotics to help reduce the risk of infection. Richters syndrome In up to1 in every 20 people withCLL, the condition will change to become very similar to an aggressive form of non-Hodgkin lymphoma . This is called Richters transformation or Richters syndrome. Symptoms of Richters syndrome include: sudden swelling of your lymph glands a high temperature (fever) night sweats unintentional weight loss tummy (abdominal) pain Richter syndrome is usually treated with a combination of chemotherapy and other powerful medicines. TheCancer Research UK website has more information on Richters syndrome . Autoimmune haemolytic anaemia Around1 in every 10 people with CLL will develop a condition called autoimmune haemolytic anaemia. This is where theimmune systemstarts to attack and destroy red blood cells. It can cause severe anaemia, making you feel breathless and easily tired. Its usually treated with steroid medication Psychological effects Being diagnosed with CLL can be very distressing and difficult to take in at first, particularly as it cant necessarily be cured and you may be advised to wait for it to get worse before starting treatment. Having to wait years to see how the condition develops can also be very stressful and make you feel anxious or depressed . Speak to your GP or care team if youre finding it difficult to cope. You may also find it useful to talk to other people who are living with leukaemia. Your GP or care team willbe able to provide you with the details of support groups in your area. Macmillan Cancer Support provides an excellent level of help and support. Their helpline number is 0808 808 00 00 , Monday to Friday, 9am to 8pm. Causes of chronic lymphocytic leukaemia Its not known what causes most cases of leukaemia. However, there are many risk factors that are known to increase your chances of getting chronic lymphocytic leukaemia. Risk factors for chronic lymphocytic leukaemia include: having a family history of the condition being of European, American or Australian origin having certain medical conditions being male Family history In some cases, chronic lymphocytic leukaemia appears to run in families. Its thought that an inheritedgene mutation (change to a gene) could increase your susceptibility to developing the condition. This means there may be certain genes in your family that make it more likely that youll develop chronic lymphocytic leukaemia. More research is needed, but having a parent or sibling (brother or sister) withchronic lymphocytic leukaemia slightlyincreases your chances of also developing the condition. Ethnicity Chronic lymphocytic leukaemia most commonly affects people of European, American and Australian origin. Its rare in people from China, Japan and South East Asia, and it affects more white people than black people. Its not known why the condition affects people of some ethnic backgrounds and not others. Other medical conditions Research has shown that having certain medical conditions slightly increases your chances of developing chronic lymphocytic leukaemia. These conditions include: pneumonia (chest infection) sinusitis shingles autoimmune haemolytic anaemia long-term (chronic) osteoarthritis prostatitis (an inflamed prostate) However, rather than causingchronic lymphocytic leukaemia, some of these conditions may occur as a result ofhaving lowered immunity during the early stages of the condition. Having a lowered immunity due to having a condition such as HIV or AIDS , or taking immunity lowering medication following an organ transplant can also increase your risk of developing chronic lymphocytic leukaemia. Radiation exposure Exposure toradiation is known to increase the risk of getting other types of leukaemia, butits not been linked specifically to chronic lymphocytic leukaemia. The Cancer Research UK website has more information about the risk factors for chronic lymphocytic leukaemia . Sex and age For reasons that are unclear, men are around twice as likely to develop chronic lymphocytic leukaemia than women. The risk of developing leukaemia also increases as you get older. Source: NHS 24 - Opens in new browser window Last updated: 13 November 2023 How can we improve this page? Help us improve NHS inform Thank You Your feedback has been received Dont include personal information e.g. name, location or any personal health conditions. Email Address e.g. you@example.com Message Maximum of 500 characters Send feedback Add this page to\n            Info For Me Also on NHS inform Chemotherapy Other health sites Cancer Research UK: Chronic lymphocytic leukaemia (CLL) Blood Cancer UK: Chronic lymphocytic leukaemia (CLL) Lymphoma Action: Chronic lymphocytic leukaemia (CLL) and small lymphocytic lymphoma (SLL) Macmillan Cancer Support: Leukaemia Macmillan Cancer Support: Chemotherapy Chronic Lymphocytic Leukaemia Support Search for cancer support services near you Enter a place or postcode NHS inform About NHS inform Editorial policy Contact us Webchat Give feedback about NHS inform Info for Me tool Terms and conditions Privacy and cookies policy Freedom of information (FOI) Accessibility Other languages and formats  2023 NHS 24  v1.1.1.17852