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At the moment, CLL is not regarded as curable. However, treatments are very successful in getting most people into remission, and this can last for a number of years. The aim of treatments is to allow people with CLL to have a normal life with no symptoms.
Research is continually being done and new treatments are being developed all the time. It takes years for new treatments to be fully tested and patients need to be monitored for a long time before doctors can fully find out how effective the treatments are. Specialists are hopeful that a cure will be developed in the future.
Many people with stage A CLL do not need to have treatment unless their leukaemia progresses. Often, stage A CLL does not cause any symptoms and develops very slowly. Early treatment at this stage does not help people to live longer and can cause side effects.
Even if you are not having treatment, it is still important to attend the hospital or GP for regular check-ups and blood counts, as this is the best way of monitoring the leukaemia. Treatment is only started if the CLL starts to progress or if symptoms become troublesome. Your doctor will discuss with you the benefits and disadvantages of treatment.
Supportive therapies are treatments which help control any symptoms caused by the CLL:
Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about:
If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations.
It is often a good idea to have a friend or relative with you when the treatment is explained, to help you remember the discussion more fully. You may also find it useful to write down a list of questions before you go to your appointment. People sometimes feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.
You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it 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 do not have it. It is essential to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.
Usually a number of cancer specialists work together as a team and they use national treatment guidelines to decide on the most suitable treatment for each person. Even so, you may want to have another medical opinion.
Either your specialist, or your GP, will be willing to refer you to another specialist for a second opinion, if you feel it will be helpful. The second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will give you useful information.
You may want to have a second opinion later on, perhaps if the CLL has come back or got worse. Again you can ask your GP or specialist to refer you.
If you do go for a second opinion, it may be a good idea to take a friend or relative with you, and have a list of questions ready so that you can make sure your concerns are covered during the discussion.
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