Types of treament for chronic lymphocytic leukaemia

Stage A CLL

Many people with stage A chronic lymphocytic leukaemia never need to have treatment. Often, stage A CLL does not cause any symptoms and develops very slowly. The average survival for people with stage A CLL is 15 years. Early treatment at this stage does not help people to live longer and can cause side effects.

There is no need to have treatment if your CLL is at an early stage, unless you have symptoms. However, it is still important to attend the hospital 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.

Stage B and C CLL

If treatment is necessary, you will be given chemotherapy either as tablets (oral chemotherapy), or by injection into a vein (intravenous chemotherapy). Occasionally a combination of tablets and injections may be given. Your specialist will be able to tell what is the best type of treatment for you by monitoring the level of leukaemia cells in your blood.

Usually, people with CLL start with chemotherapy tablets and may then have chemotherapy by injection if their symptoms do not continue to improve.

Steroids may be given along with the chemotherapy. This is to help the chemotherapy work more effectively.

Monoclonal antibodies such as alemtuzumab and rituximab may be used to treat CLL. These can attach to CLL cells and destroy them, while having little effect on normal cells. Monoclonal antibodies may be given alongside chemotherapy, or after chemotherapy treatment has ended.

Some younger patients are offered treatment with high-dose chemotherapy and stem cell transplant. This treatment is experimental, but may result in a long period with no active disease (remission) for some people.

Radiotherapy is sometimes used to treat bulky enlarged lymph nodes, or an enlarged spleen. Alternatively, an enlarged spleen may be removed by surgery. This is known as a splenectomy.

Supportive therapy

Supportive therapies are ways of controlling any symptoms caused by the CLL.

People who have infections may need to have antibiotics to treat them. Occasionally, people who have very low levels of antibodies and are very prone to infection may need to have antibodies (immunoglobulins) given into their vein by drip (infusion). The drips of immunoglobulin can be repeated, if necessary.

People who have very low levels of red blood cells may need to have a blood transfusion and medicines to increase the number of their red blood cells.

Giving your consent

Before you have any treatment your doctor will explain the aims of the treatment to you and you will usually be asked to sign a form saying that you give your permission (consent) for the hospital staff to give it.

No medical treatment can be given without your consent, and before you are asked to sign the form you should have been given full information about:

• the type and extent of the treatment you are advised to have
• the advantages and disadvantages of the treatment
• any possible alternative treatments that may be available
• any significant risks or side effects of the treatment.

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.

Patients often 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.

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 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 treatment that you are offered. The staff can explain what may happen if you do not have it. 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.

Second opinion

Usually a number of cancer specialists work together as a team to decide the most suitable treatment for a patient. Even so, you may want to have another medical opinion. Most doctors 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 useful information.

If you decide to go for a second opinion, it may again be a good idea to take a friend or relative with you, and to have a list of questions ready, so that you can make sure all your concerns are covered during the discussion.