About large granular lymphocytic leukaemia (LGLL)

Large granular lymphocytic leukaemia (LGLL) is a slow-growing blood cancer. It starts in white blood cells called lymphocytes. These become abnormal and don’t die when they should. They also produce substances that kill healthy blood cells. This leads to a high level of abnormal lymphocytes and a low level of healthy red and white blood cells.

There are two main types of LGLL, depending on the exact type of cell it starts in:

• T-cell LGLL starts in lymphocytes called T cells. Most people with LGLL have this type.
• NK-cell LGLL starts in lymphocytes called NK cells. This type of LGLL is less common.

Diagnosis and treatment options are the same whichever type you have.

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LGLL is a very rare leukaemia. Fewer than 300 people are diagnosed with it each year in the UK. This is why you might not have heard of LGLL or met anyone with it before.

LGLL can affect people of any age, but it is more common in people over 60. It affects men and women equally.

We do not know the exact cause of LGLL. Some scientists think it might start after a reaction to an infection or another trigger, but they are still researching this. LGLL itself is not infectious. You cannot catch it and you cannot pass it on to someone else.

People with LGLL have genetic changes in their leukaemia cells that stop the cells from working properly. However, in most cases we do not know why these genetic changes occur. These changes are not because of anything you have or have not done.

But there are some factors that can increase your chance of getting LGLL. These include:

• Your age: LGLL is more common in people over 60
• Having an autoimmune condition such as rheumatoid arthritis
• If you have or have had a different type of cancer, including blood cancer

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You might not have symptoms when you are first diagnosed. Many people are diagnosed after a blood test for something else. But you might get some signs or symptoms over time. The signs and symptoms you might get vary from person to person.

LGLL can cause the following signs and symptoms:

• Feeling tired for no obvious reason (fatigue)
• Infections that last a long time or keep coming back, especially skin, throat or sinus infections
• Feeling tired, breathless or dizzy due to a low red blood cell count (anaemia)
• Bruising or bleeding easily (for example, nose bleeds or bleeding gums when you brush your teeth)
• Tummy pain, bloating or discomfort due to a swollen spleen or liver (you may particularly notice this feeling under your ribs on the left-hand side)
• Fever
• Night sweats
• Losing weight without trying to

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You’ll have blood tests and sometimes bone marrow tests to diagnose LGLL. The samples go to the lab for specialist testing.

It can sometimes take a while but it is important for your haematology team to make an accurate diagnosis. It also helps them work out the most suitable treatment for you, if you need it.

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LGLL is a slow-growing blood cancer. Treatment aims to control it rather than cure it, but it is often effective.

Your outcome can vary depending on your individual situation, your health history and the way you respond to treatment. As with most cancers, outcomes vary from person to person. They depend on lots of different factors, including:

• Your age and overall fitness
• Whether or not you have any symptoms and how severe they are
• Whether or not you have any other medical conditions
• The genetic changes in your leukaemia cells
• The proteins on the surface of your leukaemia cells

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