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Chronic lymphocytic leukaemia (CLL) usually develops very slowly, so people often don’t need treatment for months or years and some will never need it. However, people with troublesome symptoms caused by CLL may need to have treatment straight away.
The aim of treatment is to reduce the number of CLL cells in your blood, bone marrow and lymph nodes to as few as possible, so that you can have a normal life with no symptoms. This is called a remission.
There are different levels of remission:
Treatment is very successful at getting most people into complete or partial remission. This may last for years. If the leukaemia does start to grow again and begins to cause problems, you can be given more treatment. This can be done several times.
If you don’t respond well to the first treatment you’ve been given, your doctors can change your treatment.
If there’s no change after treatment, or if there is an increase in the number of CLL cells or in the size of the lymph nodes, the CLL is described as refractory. This means the cancer cells haven’t responded to treatment.
If treatment to control CLL is no longer helpful, supportive care with medicines and blood transfusions can be given to reduce symptoms.
There are a number of things your doctors will take into account when deciding if you need treatment. These include checking for the following signs and symptoms:
People with stage A CLL| don’t usually need treatment. Often, the CLL doesn’t cause any symptoms and develops very slowly. Early treatment at this stage doesn’t help people to live longer and it can cause side effects. Some people with stage A CLL will never need treatment.
Even if you’re not having treatment, it’s still important to attend the hospital or GP surgery for regular check-ups and blood counts to monitor the leukaemia. Usually, you’ll only need to start treatment if the CLL starts to progress or if symptoms become troublesome. Your doctor will discuss the benefits and disadvantages of treatment with you.
A common symptom of CLL is tiredness (fatigue). Our section on coping with fatigue| has more information about how to manage this.
If you have CLL at stage B or stage C, you may be offered one or more of the following treatments:
Your MDT (multidisciplinary team - the team of health professionals that plan and manage your care) uses national treatment guidelines to decide on the most suitable treatment for you. Even so, you may want another medical opinion.
If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion.
Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information.
If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so you can make sure your concerns are covered during the discussion.
Before you have any treatment, your doctor will explain its aims. They will ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment.
No medical treatment can be given without your consent, and before you’re asked to sign the form you should be given full information about:
If you don’t understand what you’ve been told, let the staff know straight away so they can explain again. Some cancer treatments are complex, so it’s not unusual to need repeated explanations. It’s a good idea to have a relative or friend with you when the treatment is explained. This can help you remember the discussion. You may also find it useful to write a list of questions before your appointment.
People sometimes feel that hospital staff are too busy to answer their questions, but it’s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions.
You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you.
You are also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice.
Content last reviewed: 1 January 2013
Next planned review: 2015
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
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© Macmillan Cancer Support 2013
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