Jan 04, 2011 - 8:19 am
Hello- I stumbled upon this board last night and thought I would write. I am 59 years old and was diagnosed with myelofibrosis in November of 1996. I don't know how I have lasted for almost 15 years. In the beginning, of course, I panicked. My husband and I were living in the Boston area then and I immediately went to Dana Farber Cancer Center. I was told that the disease was "in it's infancy" --I was diagnosed after a routine physical at my doctor's office-and put on a trial drug of Interleukin 4. It almost killed me. I went from feeling pretty normal to requiring 2 blood transfusions a week. After about a month and a half, I decided no more-and I have not had any medicine since then, with the exception of Procrit infections and I didn't find that to help at all.
I have never had much pain in my spleen and liver, although they are both enlarged and almost meet in the middle of my stomach. I can feel them. I have never had any bone pain. I haven't seen my oncologist in almost a year. Last February, though, I developed shingles in my throat- huge blisters- and lost 30 lbs. I could only drink ice water. Since then, whenever I get a small cut I have my regular dr. prescribe Cipro as I get infections very easily. I am currently using it as I developed a small cold sore last week that just won't go away.
Aside from going on disability when I was first diagnosed, I lead a normal life. Four years ago we moved to a tiny town in northern NH, 4 miles from the Canadian border. I would say the lack of stress has had a lot to do with my health.
I would like to hear from anyone, really, who has this disease. Perhaps when you hear that I have lived this long it might give you some hope. We are all different, but so far it I have been lucky.