Treatment for chronic lymphocytic leukaemia

There are different levels of remission:

• Partial remission (PR) – The number of CLL cells in the blood and bone marrow has reduced and the lymph nodes are smaller, but CLL is still detectable.
• Minimal residual disease (MRD) – There are so few CLL cells remaining that they can only be detected with special blood tests.
• Complete remission (CR) – No CLL cells can be detected.

Treatment is very successful at getting most people into a partial or complete remission. This may last for years.

When the leukaemia starts to grow again and begins to cause problems, you can be given more treatment. This can be done several times.

If there is 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 it hasn’t responded to treatment.

If treatment to control CLL is no longer helpful, supportive (palliative) care with medicines and blood transfusions can be given to reduce symptoms.

Starting treatment Back to top

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.

There are a number of things your doctor will take into account when deciding if you need treatment. These include checking for the following signs and symptoms:

• weight loss
• severe night sweats
• a very high number of white blood cells (possibly more than 200 x 10⁹/l)
• white blood cell count rising quickly
• enlarged lymph nodes
• low level of red blood cells (anaemia) or platelets.

Stage A Back to top

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 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.

Stage B and C Back to top

If you have CLL at stage B or stage C| you may be offered one or more of the following treatments:

• Chemotherapy – This is a common treatment for CLL. It can be given as tablets (oral chemotherapy), or into a vein (intravenous chemotherapy). A combination of oral and intravenous chemotherapy may be given.
• Steroids – These may be given with chemotherapy to help the treatment work more effectively. Steroids may also be used to treat CLL that doesn’t respond well to chemotherapy and to treat a type of anaemia (low red cell count) that can be caused by CLL.
• Monoclonal antibodies – These are sometimes given alongside chemotherapy, or after chemotherapy treatment has finished. They target lymphocytes while having little effect on other cells.
• Stem cell transplant – This treatment may be suggested for people who have CLL that hasn’t responded to chemotherapy, or who have a type of CLL that’s unlikely to respond to it. It’s an intensive treatment, and so is usually only suitable for younger people who are fit enough to cope with the side effects.
• Radiotherapy – This is sometimes used to treat enlarged lymph nodes or an enlarged spleen.
• Surgery – This is occasionally used to remove an enlarged spleen. This is known as a splenectomy.
• Supportive therapy – This may be given to help control any symptoms caused by CLL such as infections or anaemia.

Giving your consent Back to top

Before you have any treatment, your doctor will explain its aims. They will usually 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 are asked to sign the form you should be given full information about:

• the type and extent of the treatment
• its advantages and disadvantages
• any significant risks or side effects
• other treatments that may be available.

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 for people to need repeated explanations.

It’s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. Patients often 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.

Second opinion Back to top

Your multidisciplinary team (MDT) uses national treatment guidelines to decide 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.

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 relative or friend with you, and have a list of questions ready so that you can make sure your concerns are covered during the discussion.