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66F here. I was diagnosed with mature T-cell neoplasm; T cell large granular lymphocytic leukemia with amegakaryocytic thrombocytopenia 2 years ago. Since then I survived with the blood transfusion so far. I want to find more information about my disease. Any information really appreciated.
Hi dodopop ( what a fabulous sign on!),
Apologies about the delay in getting back to you. LGLL is a fairly rare type of leukaemia and 50% of patients will not require any treatment apart from transfusions, like yourself. it is a slow moving disease with a median survival of over 10 years. It is most common in people over 60 years of age.
For those that do need treatment, Methotrexate and/or cyclophosphamide are given with about 60% of patients responding well to treatment.
If you experience an enlarged spleen which would give you symptoms such as nausea, discomfort while wearing a belt, weight loss, or feeling full quickly; you should tell your team. It is important to be aware that you may experience recurring infections as your neutrophils ( the white blood cells that control infection) may be low.
The lymphoma action website should have more detailed information on your disease. They may also have others on their forum with LGLL
Caroline - Macmillan Information Nurse Specialist
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