I am a 69 year old male. I was diagnosed with nonspecific myeloproliferative disorder in 2009.
Twelve months ago, following declining red blood cell counts and a bone marrow biopsy, diagnosis of myelofibrosis was made.
I initially started on hydroxyurea and prednisolone, but after four months Jakafi (Jakavi in Australia) became available on the pharmaceutical benefits scheme and I changed to that drug (20mg. twice daily) which I have been taking for eight months.
I now have no problems with enlarged spleen or liver, but my red cell count is going between 80 and 105. White cell count normally around 6 and platelets about 160. These last two figures dropped to 3 and 98 when I recently had a heavy cough and cold but soon bounced back.
I am in a pattern of fortnightly blood tests and four weekly transfusions of two units of blood.
My haematologist thinks that my anaemia will improve but that hasn’t happened yet.
Apart from feeling a bit weak when getting towards transfusion time my illness gives me no other problems and doesn’t stop me from part time work, golf, walking and cycling.
Wondering how this compares with other sufferers.
Are transplants still a possibility at my age? I have read vastly differing versions of risk and success.
I live on the east coast of Australia thus blood count figures are expressed a little differently to most.