Experiences with
Chronic lymphocytic leukemia (CLL)

SymptomsCausesDiagnosisMedical treatments

Symptoms of chronic lymphocytic leukaemia are not always obvious. Some of the main symptoms are swollen glands, losing weight and getting ill a lot.

It's not clear what causes chronic lymphocytic leukaemia. It's rare, but you may be more likely to get it as you get older.

The main tests for chronic lymphocytic leukaemia are blood tests to check for signs of cancer.

Chronic lymphocytic leukaemia does not always need to be treated straight away. The main treatments include targeted medicines and chemotherapy.

Main symptoms of chronic lymphocytic leukaemia

Many people who have chronic lymphocytic leukaemia do not have any symptoms.

Symptoms are not always obvious at first and can be similar to other conditions.

The main symptoms of chronic lymphocytic leukaemia include:

swollen glands, usually in your neck or under your arms
losing weight
getting ill a lot
feeling tired even though you've had a good night's sleep
a rash that looks like small bruises or bleeding under the skin and does not fade when you roll a glass over it, similar to meningitis
bleeding or bruising for no reason
looking unusually pale and feeling breathless
a high temperature even though you're not unwell
aches and pains that will not go away
sweating at night

Chronic lymphocytic leukaemia is rare in people under the age of 40.

you have symptoms of chronic lymphocytic leukaemia

Main causes of chronic lymphocytic leukaemia

It's not clear what causes chronic lymphocytic leukaemia.

Chronic lymphocytic leukaemia is rare, but it's more common:

as you get older – it's very rare in people under 40
if you're male
if someone in your family has had it

Main tests for chronic lymphocytic leukaemia

Your doctor will do tests to check if you have chronic lymphocytic leukaemia.

The main tests are blood tests to check your blood cells and look for signs of cancer.

These may be done by a GP or a specialist.

Main treatments for chronic lymphocytic leukaemia

It's not possible to cure chronic lymphocytic leukaemia, but treatment can control it.

You may not need to have treatment straight away when you're diagnosed with chronic lymphocytic leukaemia.

You'll usually be seen by a doctor or nurse regularly. How often you're seen depends on the stage of your cancer, if you're having active treatment and how you're feeling.

When you start treatment depends on:

your symptoms
the stage of the cancer
your general health

You can live with chronic lymphocytic for years and may need to repeat treatment several times.

The main treatments for chronic lymphocytic leukaemia are targeted medicines and chemotherapy. You may just have a targeted medicine on its own or combined with chemotherapy.

Rarely, other treatments can include radiotherapy and surgery.

The specialist team looking after you will:

explain the treatments, benefits and side effects
work with you to make a treatment plan that's best for you
help you manage any side effects
help and support you during your recovery

You'll have regular check-ups during and after any treatments. You may also have tests and scans.

If you have any symptoms or side effects that you're worried about, talk to your specialists. You do not need to wait for your next check-up.

Where to find help and support

You and your loved ones will be supported throughout your treatment by a group of specialists.

The clinical nurse specialist, or another member of your specialist team, will be able to give you information about local support services that you may find helpful.

There are also national cancer charities that offer support and information about chronic lymphocytic leukaemia.