Hi, I've had chronic neutropenia for many years and medics have never got to the bottom of why. This is causing problems with my chemotherapy (5FU - flouracil with folinic acid) - I've had two rounds so far, last week's round was cancelled: on Tuesday the count was too low 0.25, by Thursday it was too high. They give me filgrastim injections to take to boost my bone marrow to create more white cells, but they don't seem able yet to get the dose right. What's concerning is this appears to be new to the team, including the oncologist. Is having chronic neutropenia so rare?? I'd love to know if there's anyone else in the community who has chronic neutropenia and to hear of your experience with chemotherapy.
On another note, its been lovely to have this extra week off (one week on, one week off) and to feel 'well' again, but makes me wonder how I'm going to get through 12 x cycles!!
