Most people don’t have any symptoms and CLL is only picked up when they have a blood test for something else. If you do have symptoms, they may include:
- feeling very tired
- swollen lymph nodes (glands in your neck, groin and under your arms)
- a fever and sweating at night
- losing weight for no reason you can think of
- pain or discomfort in your tummy (abdomen)
- bruises or bleeding (such as nosebleeds)
- frequent infections – you might have lots of cold sores or get pneumonia, for example
If you have any of these symptoms, contact your GP.
Your GP will ask about your symptoms and examine you. He or she may also ask about your medical history and that of your family.
You may need to have a blood test to check the levels of different cells in your blood. If your GP thinks you may have CLL, he or she will refer you to a haematologist. This is a doctor who specialises in conditions that affect the blood.
Your doctor will carry out some further tests to confirm whether or not you have CLL. These may include:
- more blood tests
- a physical examination to check whether your spleen, lymph nodes or liver are enlarged
If these show that you have CLL, you may have one or more of the following tests to see how far it has progressed. These will also help to determine which treatment is best for you.
- Blood tests can look at the genetic make-up of your leukaemia cells.
- A bone marrow biopsy can check for abnormal cells. Your doctor will use a needle to remove a sample of your bone marrow, which will be examined under a microscope.
- Tests on leukaemia cells can confirm exactly what type they are.
- A CT scan of your whole body can confirm if your lymph nodes and spleen are enlarged.
- A chest X-ray can check that your lungs are working properly.
Staging for chronic lymphocytic leukaemia
You may hear your doctors referring to stages of cancer. These measure how far your leukaemia has progressed so that you receive the right treatment. There are different methods of doing this but in the UK, CLL is classified according to how many groups of lymph nodes are affected.
- Stage A – If you have stage A, you have fewer than three areas of enlarged lymph nodes in your body.
- Stage B – This is when you have three or more areas of enlarged lymph nodes in your body.
- Stage C – You have three or more groups of enlarged lymph nodes and a low level of red blood cells (anaemia) or platelets (thrombocytopenia), or both.
Sometimes, CLL can change (transform) into a lymphoma, which is cancer of your lymphatic system. You might also hear this called Richter’s syndrome. This happens to between five and 10 in every 100 people with CLL.
If you’re diagnosed with stage A CLL and don’t have any symptoms, you’re unlikely to need any treatment at first. However, your doctor will want to check your blood count regularly to keep an eye on your condition. CLL develops very slowly so it’s possible that you will never need any treatment.
If your condition gets worse, or you have symptoms, you may be offered treatment to relieve these and to help you live longer. If your symptoms stop, it’s called remission and this can last for years. You can have more treatment if your cancer starts to grow again.
Treatment is also aimed at reducing the size of your lymph nodes if they are enlarged and causing problems.
Chemotherapy uses medicines to destroy cancer cells in your bone marrow. This is the main treatment for stages B and C of CLL. The type of chemotherapy medicines you have will depend on your general health and the stage of CLL you have. You may take the medicines as tablets or have them through a drip into a vein in your arm, either in hospital or at home.
Your doctor may prescribe you steroids to take on their own, or at the same time as chemotherapy to help it work better. They can also treat anaemia and thrombocytopenia caused by CLL.
Radiotherapy uses radiation to destroy cancer cells. You may have it if you have an enlarged spleen or lymph nodes that are causing you problems.
Biological therapies are medicines that are designed to copy or disrupt your natural body substances to help fight cancer cells. Rituximab and alemtuzumab are both a type of biological therapy known as monoclonal antibodies, which are used in the treatment of CLL. They work by finding and then destroying CLL cells in your bone marrow. You may be given these medicines alongside chemotherapy or after your chemotherapy is over. Other examples of biological medicines include ofatumumab and obinutuzumab.
Bone marrow (stem cell) transplant
This is when you have a transplant of healthy bone marrow or stem cells from somebody else (potentially a brother or sister) into your body. It can cause serious side-effects but you may be offered a bone marrow (stem cell) transplant if you’re young and in good health.
New treatments for CLL are being tested in clinical trials all the time. These include new chemotherapy medicines and biological therapies, as well as different types of transplants. You may be able to take part in a clinical trial to test one of these new treatments – ask your doctor for more information.
The exact reasons why you may develop CLL aren’t fully understood at present. However, doctors do know that there are several things that increase your risk of developing it. These include:
- getting older – CLL is most common in people over 60
- your gender – men are more likely than women to develop CLL
- ethnicity – you’re more likely to get CLL if you’re white
- other people in your family having had CLL
How will I know if my chemotherapy is working to treat chronic lymphocytic leukaemia?
You will have regular checks to see how well your chemotherapy is working.
Your doctor will keep an eye on your general health while you’re having chemotherapy. They will also examine you regularly to see if any swelling of your lymph glands and spleen goes down. You’ll also have your blood tested regularly to check the levels of the different cell types. This is to make sure your treatment reduces the number of chronic lymphocytic leukaemia (CLL) cells in your blood, without lowering other cells too much. Your doctor will also monitor how well your liver and kidneys are working.
Ask your doctor or nurse for more advice about what you can expect during chemotherapy.
Will my treatment for chronic lymphocytic leukaemia make my hair fall out?
This depends on the type and dose of the treatment you have.
Most treatments for CLL don't lead to severe hair loss, although this may happen if you have high-dose chemotherapy. The more commonly used treatments don't usually cause you to completely lose your hair but it may get thinner.
Your doctor or chemotherapy nurse will be able to tell you what to expect from your treatment.
How can I donate bone marrow?
You can join the British Bone Marrow Registry by registering with the National Blood Transfusion Service or the charity Anthony Nolan.
You need to be between 18 and 30 to register as a donor (although you can stay listed as a donor until you're 60). Once you’ve registered, you’ll be asked to give a sample of blood, which is held on file. The service will contact you if you match someone who needs bone marrow or stem cells.
If you’re found to match someone who needs a bone marrow transplant, you can donate in one of two ways. The most common is to have stem cells taken from your blood using a machine that separates them from the rest of your blood. The other method involves removing stem cells from the bone marrow in your hip bone. This is done under general anaesthetic so you will be asleep during the procedure. You’ll need to stay in hospital for a couple of days afterwards.
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- Overview of leukemia. The Merck Manuals. www.merckmanuals.com, published July 2012
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- Oscier D, Dearden C, Eren E, et al. Guidelines on the diagnosis, investigation and management of chronic lymphocytic leukaemia. Br J Haematol 2012; 159(5):541–64. doi:10.1111/bjh.12067
- Eichhorst B, Dreyling M, Robak T, et al. Chronic lymphocytic leukemia: ESMO clinical practice guidelines for diagnosis, treatment and follow-up. Ann Oncol 2011; 22(6):vi50–4. doi:10.1093/annonc/mdr377
- Bendamustine for the first-line treatment of chronic lymphocytic leukaemia. National Institute for Health and Care Excellence (NICE), February 2011. www.nice.org.uk
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- Rituximab for the first-line treatment of chronic lymphocytic leukaemia. National Institute for Health and Care Excellence (NICE), July 2009. www.nice.org.uk
- Joint Formulary Committee. British National Formulary (online) London: BMJ Group and Pharmaceutical Press. www.medicinescomplete.com, accessed 1 December 2014
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- Who can join the register? Anthony Nolan. www.anthonynolan.org, accessed 1 December 2014
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