Monitoring for chronic lymphocytic leukaemia (CLL)

Doctors usually wait until there are signs the CLL is progressing before suggesting treatment. Monitoring (watch and wait) means delaying treatment for CLL until it is needed.

Monitoring for chronic lymphocytic leukaemia (CLL) is used when you do not need to start treatment straight away. It is also called watch and wait.

Your GP or haematologist will check:

  • your blood cell count regularly
  • if you have any symptoms.

In the first year of being diagnosed, they will usually see you at least once or twice. If you develop symptoms, your haematologist will talk to you about whether you need to start treatment. This may also happen if there are changes to your blood cell count.

Some people may find it hard knowing that they have been diagnosed with leukaemia but are not going to have treatment. Treatments for CLL, such as chemotherapy, can cause side effects and may affect your quality of life. Delaying treatment can avoid side effects. Although CLL cannot be cured, you usually have long periods of time when it does not affect you and you have no symptoms.

It is important to talk to your specialist doctor or nurse. They can help you understand why monitoring may be the best approach for you.

If you are worried about not having treatment, here are some helpful tips from people who have had monitoring:

  • Think of your time without treatment as an opportunity to make the most of your quality of life. Use it to do things you enjoy, and to get as fit and healthy as you can.
  • Try to focus on the present rather than what might happen in the future.
  • Talk about how you feel. You could do this by talking to family and friends, or joining a support group or online forum such as the one on our Online Community.

Monitoring can be difficult to adjust to at first, but many people find it gets easier with time.

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