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Chronic lymphocytic leukaemia (CLL) treatment and side effects

We're here for you if you want to talk

0808 2080 888

[email protected]

Chronic lymphocytic leukaemia (CLL) treatment planning

You’ll only be given active treatment for CLL if and when you need it.

If you don’t need to have treatment straight away, your healthcare team may recommend ‘watch and wait’ (sometimes called ‘active monitoring’). This means you won’t start treatment, but you’ll have regular appointments where you’ll be monitored closely for any changes.

It might be surprising to hear that you have cancer but you don’t need treatment straight away. Research has shown that for people with few or no symptoms, starting treatment straight away is not any better than delaying treatment until tests show you need it.

Watch and wait

Watch and wait won’t affect your prognosis (outlook) and it means that you won’t have to go through any of the side effects of chemotherapy unless you need to.

The decision about whether to watch and wait before starting treatment will be based on how you’re doing and not on the cost to the NHS, or any other reason.

You’ll have regular appointments at your GP surgery, in hospital, or using ‘remote monitoring’, which is like a phone or video clinic, and offers a good way to be followed up without affecting your life too much. Your doctor should speak to you about which type of monitoring is suitable for you.

Wherever your monitoring takes place, it’s really important for you to take part, as this is when you and your medical team can talk about how you’re feeling and whether you might need to start treatment.

We have more information and stories about living on watch and wait.

Sarah, 47, was diagnosed with chronic lymphocytic leukaemia (CLL) in 2011

Sarah's story

Cycling kept me on track during watch and wait

Sarah's story

Starting treatment

You can’t start treatment if your consultant doesn’t think you need to. If you don’t agree with them, you can ask for a second opinion.

You might need to start treatment if:

  • your blood counts are changing – so if your red cell count or platelet count is going down or the number of CLL cells in your blood is going up quickly
  • you have a very swollen spleen or lymph nodes, especially if these are uncomfortable
  • you have symptoms like increasing extreme fatigue (tiredness), fever without any other signs of infection, drenching night sweats, or marked weight loss.

None of these is an automatic ‘trigger’ for starting treatment. If your consultant thinks it’s important to start treatment they’ll tell you and explain the options open to you, to help you make a decision.

If you decide you don’t want to start treatment, or you want to delay your treatment, it’s important that you understand the risks involved.

Erica sitting at her desk with laptop

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