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Large granular lymphocytic leukaemia (LGLL) is a very rare, specific type of leukaemia. LGLL occurs in two forms but these behave the same way and are treated the same way so they are not described separately.
Blood cells are formed in the bone marrow, which is the spongy tissue found inside the bones. Blood-forming stem cells divide to produce either more stem cells or immature cells that become mature blood cells over time. A blood stem cell may become a myeloid stem cell or a lymphoid stem cell.
Large granular lymphocytic leukaemia (LGLL) affects T lymphocytes or, less commonly, NK lymphocytes.
The cause(s) of LGLL are not known but it is important to understand that:
The most common symptom at diagnosis is repeated infections, caused by low numbers of neutrophils (white cells which defend the body against infection). Even when the neutrophil count is very low, infections are rarely severe enough to be life-threatening.
Other common symptoms are anaemia, leading to tiredness and shortness of breath, and autoimmune conditions such as rheumatoid arthritis.
Between a quarter and a half of all patients will have an enlarged spleen, which can cause abdominal discomfort (tummy ache), especially after eating. Unlike some forms of leukaemia the liver and the lymph nodes (glands) are not usually enlarged.
The most important test for diagnosis of LGLL is a full blood count. This will show the enlarged granular lymphocytes which give the disease its name. The blood count is likely to be repeated to check for progression of the disease and for response to treatment.
Other tests which may be done include:
About half of all patients who have LGLL do not need treatment. Treatment is usually given if patients have symptoms such as repeated infections or anaemia.
LGLL is not considered curable but it usually responds well to treatment, when this is needed. Most patients with LGLL have a long survival with a good quality of life.
The main ways in which LGLL is treated are:
The drugs used for LGLL are not cell-killing drugs, like those to treat many forms of cancer. This means that side effects are usually milder and do not include hair loss or nausea.
The details of your treatment will vary depending on the features of your LGLL and your general fitness. You will be given a chance to discuss treatment options and detailed information on your treatment plan before it starts. The side effects of treatment vary between different types of treatment and different patients. You will be given detailed information about any likely side effects before you start treatment.
We understand going through a blood cancer through journey can be difficult. It may help to talk to a close friend or relative about how you are feeling. Here are some questions that may be useful to ask your doctor.