My husband has just been diagnosed with myelofibrosis. His is 53. When admitted to the hospital his hemoglobin was 61 and he could hardly walk. He had four units of blood and he seems better now. I read all I could about this disease but some of the info seems confusing. We have an appt. with an oncologist in two weeks. Does it mean he will have to have chemo or radiation even if he is not going presently for the BMT? They said his spleen was enlarged but we never got any details. Presently he has occasional pains in his legs and his spleen doesn't bother him. From what I understand, it's better not to remove the spleen. Someone mentioned the drug Procrit to raise the hemoglobin levels. Does it have any side effects? I would really appreciate some info or hear from people in similar circumstances. My husband does his best to be positive but sometimes it's hard. He also has diabetes and has had an angioplasty two years ago so I'm affraid he might not be the best candidate for a BMT. However, knowing the grim prognosis with this disease, he asked his brothers to be tested as donors.
Liz