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Chronic lymphonic leukaemia (CLL) symptoms and diagnosis

We're here for you if you want to talk?

0808 2080 888

[email protected]

Symptoms of chronic lymphocytic leukaemia (CLL)

There are some symptoms of CLL you might have before you’re diagnosed, and some you might have afterwards. Not everyone will have the same symptoms.

Before you’re diagnosed

It’s likely that you won’t have any symptoms at all before or when you’re diagnosed. That’s why so many patients with CLL are diagnosed after routine blood tests or when a doctor finds swollen lymph glands at a check up.

However, you may have noticed the following symptoms before you were diagnosed with CLL:

  • extreme tiredness (fatigue) and/or weakness
  • swollen lymph nodes (glands)
  • drenching night sweats
  • fast and significant weight loss without trying
  • high temperature (fever) without any other signs of infection
  • repeated infections (such as colds and flu).

Some people have one or two of these symptoms, and others may have all of them.

After you’re diagnosed

If you get any new symptoms after you’ve been diagnosed, or if you feel unwell, contact your hospital straight away. Your hospital team will tell you whether you need to see them, or if you can see your GP instead.

Signs and symptoms of CLL usually develop slowly and you might not be sure of what to look out for. Here are the main ones:

  • getting tired and breathless more quickly
  • drenching night sweats
  • losing weight quickly, when you’ve not been dieting
  • a high temperature (fever) without any other signs of infection
  • swollen lymph nodes (swellings in your neck, armpits, groin, or under your collarbone) – if you had swollen lymph nodes before you were diagnosed, see your doctor if they increase in size or you notice more of them
  • feeling full after only eating small amounts, or discomfort or pain under your ribs on your left side – this can mean your spleen is enlarged.

Infections

Because of your CLL, you’re more likely to get infections. The most common signs of infection are:

  • raised temperature
  • cough or sore throat
  • confusion or agitated behaviour, especially if it comes on suddenly – this is more common in older people
  • rapidly feeling more poorly
  • fast heartbeat and breathing
  • difficulty in passing urine or producing little or no urine
  • pain which comes on quickly and gets worse.

If you’re receiving treatment, your doctor will probably suggest that you contact your hospital team if you have signs of an infection. If you’re not receiving treatment, for example if you’re on ‘watch and wait’, you may be able to see your GP instead. Speak to your specialist about spotting infections and who to call.

We have more information about managing your risk of infection in our section on side effects.

Dawn, support line worker

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