Monitoring watch and wait chronic lymphocytic leukaemia (CLL)

Only a small number of people with chronic lymphocytic leukaemia (CLL) need to start treatment straight away. Doctors usually wait until there are signs the CLL is progressing before suggesting you have treatment. There is no evidence that starting treatment before this helps, and it can cause side effects.

CLL usually develops very slowly, so you may not need treatment for months or years. Some people will never need treatment.

Even if you are not having any treatment, you will see your haematologist or GP regularly for check-ups and blood tests.

This is called monitoring (watch and wait).

Types of treatment for chronic lymphocytic leukaemia (CLL)

Most people are treated with a combination of 2 types of treatment. These are:

Some targeted therapies are also immunotherapies. When these drugs are given with chemotherapy this is sometimes called chemoimmunotherapy.

Other treatments that are sometimes used include the following:

  • Supportive therapy

    You may have supportive therapy to help control any symptoms caused by CLL, such as infections or anaemia.

  • Donor stem cell transplant

    A stem cell transplant is only usually used to treat CLL when other standard treatments are not suitable, or have not worked. Having a stem cell transplant may result in a long period of remission. But only a small number of people with CLL have one. This is because it can cause very serious side effects and there are many other effective treatment options available. Your doctor will tell you if it might be suitable for you.

  • Radiotherapy

    Radiotherapy is not often used to treat CLL because it usually only targets specific areas in the body. Radiotherapy is sometimes used to target an area of the body where CLL cells have built up. For example, it might be used to treat the spleen or a group of enlarged lymph nodes.

    CLL is very sensitive to radiotherapy. If just one area of your body is being treated, you only need a low dose. This means that side effects are not common. Radiotherapy is also sometimes given before a stem cell transplant. This is called total body irradiation (TBI).

  • Steroids

    You may have treatment with steroids if the number of red blood cells in the blood falls very quickly, because of a condition called auto-immune haemolytic anaemia (AIHA).

    Occasionally, people have high-dose steroid treatment called high-dose methylprednisolone (HDMP). With HDMP, you can have the steroids as tablets or as a drip into a vein. Your doctor may prescribe antibiotics, anti-viral drugs or anti-fungal drugs to help prevent infection during your treatment.

  • Surgery

    This is occasionally used to remove an enlarged spleen (splenectomy).

There are many new treatments being developed for people with CLL. You may be invited to take part in a clinical trial of one of these treatments. Ask your doctor about any clinical trials you could join.

Deciding when to start treatment for chronic lymphocytic leukaemia (CLL)

Aims of CLL treatment

The aim of treatment is to reduce the number of CLL cells to as few as possible. This is called remission. It is not usually possible to cure CLL, but it can be well controlled. Most people with CLL can have long periods of time when they have a normal life with no symptoms.

Stages of CLL and treatment

If you have stage A CLL, you do not usually need treatment when you are diagnosed. Often, stage A CLL does not cause any symptoms and develops very slowly. Some people with stage A CLL may never need treatment. You will usually only start treatment if there are signs the CLL is progressing.

Some people with stage B CLL may not need to start treatment straight away. This depends on what signs and symptoms you have.

If you have stage C CLL, you usually need treatment soon after being diagnosed.

Reasons you may need treatment

There are a number of signs and symptoms your doctors will check for when they decide if you need treatment. These include:

  • very enlarged or fast-growing lymph nodes
  • a low level of red blood cells (anaemia) or platelets
  • severe night sweats
  • weight loss
  • whether the number of white blood cells is high and increasing quickly.

Your doctor will check these symptoms are being caused by the CLL and not something else. This helps them decide whether to start your treatment.

Your doctor will also ask you about your general health and check your fitness when planning your treatment. They can explain the benefits and disadvantages of treatment to you.

Before starting treatment, you will have some blood tests to check for the hepatitis B virus and HIV. These are routine tests people have before starting treatment for CLL. Your doctor will talk to you about these tests.

Types of remission in chronic lymphocytic leukaemia (CLL)

There are different levels of remission:

  • Complete remission (CR) – no CLL cells or enlarged lymph nodes can be found by standard tests and scans.
  • Minimal residual disease (MRD) – there are so few CLL cells remaining that they can only be found with special tests on the blood or bone marrow.
  • Partial remission (PR) – there are still CLL cells in the blood or bone marrow, but their number has reduced and the lymph nodes are smaller.

For most people, treatment is very successful at getting the leukaemia into complete or partial remission. This may last for years.

If the leukaemia does not respond well to the first treatment you have, your doctors can change the treatment. There are many different treatment options available for CLL.

When the leukaemia starts to grow again and starts to cause problems, you can have more treatment to put the leukaemia back into remission. This can be done several times.

If treatments to control CLL do not work, or stop working, you can have supportive therapy to manage symptoms.

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