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CLL (chronic lymphocytic leukaemia) symptoms and diagnosis

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CLL (chronic lymphocytic leukaemia) symptoms

Many people don’t have any symptoms at all when they’re diagnosed with CLL. In fact it’s common to be diagnosed after a routine blood test for another reason.

Fatigue and CLL

Fatigue is a very common symptom at all stages of CLL, and many people will experience it at the point of diagnosis. It’s a type of extreme tiredness that comes on quickly and can take time to go away.

There are things you can do to manage fatigue so you can carry on as normally as possible. Take a look at our information on blood cancer and fatigue, including people’s stories about how they cope with fatigue in their daily lives.

Other symptoms of CLL

Other symptoms are more common in advanced CLL and are rare at diagnosis, when most people feel well.

If you experience any of these symptoms at any stage of CLL, tell your GP or hospital team. It will help them decide whether it’s time to start treatment.

  • getting tired or breathless more quickly
  • swollen lymph nodes (glands), usually in your neck, armpits, groin, or under your collarbone
  • repeated infections such as colds and flu
  • losing weight quickly when you’ve not been trying
  • high temperature (fever) without any other signs of infection
  • drenching night sweats that soak your night clothes and bedding.

Not diagnosed but worried about symptoms?

Having any of these symptoms does not mean you have CLL or any other type of blood cancer. But if you are experiencing symptoms that are unusual for you, go on for a long time or are worrying you, contact your GP and describe your symptoms as clearly as you can.

Our free pocket guide to blood cancer symptoms can help you record your symptoms for discussion with your GP.

Infections and CLL

CLL affects your immune system, so even if you don’t need treatment for CLL, you’re more likely to get infections. The most common signs of infection are:

  • fever (a temperature of 37.5°C or above)
  • low temperature (less than 36°C)
  • shivering and sweating
  • feeling confused
  • sore throat and cough
  • rashes and swelling
  • frequent watery poos (diarrhoea)
  • a burning or stinging sensation when weeing, or trouble weeing at all
  • unusual stiffness of the neck
  • achy, flu-like symptoms
  • generally not feeling well

If you’re having treatment for CLL, you should contact your hospital team if you have signs of an infection. It’s very important to tell them straight away. Not only are infections easier to treat when they’re picked up early, but they can also be life-threatening if they’re left to get a hold.

If you’re on watch and wait, you may be able to see your GP instead.

Find out who to contact if you think you have an infection and keep the details where you can easily find them.

We have more information about managing your risk of infection.

We also have information about shingles, an infection of a nerve and the skin around it. This is common in people with a weakened immune system who have had chicken pox in the past.

Vaccinations when you have CLL

If you have CLL, even if you are not on treatment, you should avoid having live vaccines.

Fortunately only a few vaccines used in the UK are live ones. The most commonly used are MMR (measles, mumps and rubella) and the shingles vaccine Zostavax®. (The shingles vaccine Shingrix isn’t live, so it’s suitable for people with CLL.)

The yellow fever vaccine, occasionally needed for travel to certain areas, is also a live vaccine.

You’ll be advised to have seasonal flu, pneumococcal and Hib vaccinations to protect you against serious infections. It is also safe to be vaccinated against covid-19 – none of the approved covid vaccines are live.

Vaccinations may not work as well as for someone with a healthy immune system but should offer some protection. Your healthcare team will be able to give you more information.

Read our information about covid vaccinations and how effective they may be for people with blood cancer.

CLL and your skin

People with CLL have a higher risk of skin cancer than other people, and the risk is higher for those who have had treatment.

It’s important to be aware of this and follow standard sun safety advice as soon as you get your diagnosis. It’s also a good idea to check your skin regularly and tell your hospital team or GP if you notice any changes.

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We're here for you if you want to talk

0808 2080 888

[email protected]