I have just been diagnosed with a malignant cancer in my bone marrow, official name is T Cell LGLL (Large Granular Lymphocytic Leukaemia). Apparently 30% of people who have this extremely rare cancer also have RA. I have had RA for about 25 years now, but the last couple of years I felt that something else was wrong. I had severe chronic neutropenia for over 2 years with neutrophils of 0.5 and not much higher. The beginning of this year they dropped to 0.1 and have stayed there all year. I had a bone marrow biopsy 18 months ago which showed abnormal T cell clusters. I have had neutropenic sepsis 3 times now, twice this year so they did another biopsy which showed the malignancy. The cancer is killing my neutrophils. I am still in shock I think but reading everything I can get my hands on about this. My haematologist does not have anyone else with this because it is so rare so there is no set medication so she is taking advice on what to put me on, there is no cure but it is very slow growing. My greatest danger at the moment is getting an infection and having sepsis again, which is life threatening. I wonder if anyone else has been diagnosed with this. On a lighter note, my daughter is going to give birth to my first grandchild, hopefully in the next few days, so I can't wait to meet this little baby girl who is going to be called Robyn.
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