My wife was recently diagnosed with Chronic Idiopathic Myelofibrosis. This disease apparently evolved from her Essential Thrombocythemia that she has had for a number of years. This group of hematological malignancies in which her bone marrow cells that produce her bodies blood cells, develop and function abnormally. The disease is progressive and can strike anyone at any age, and there is no known cure. The ET was diagnosed after her spleen started enlarging. Her doctor noticed this and sent her to a specialist who correctly figured out what was going on. Right now she is becoming anemic, is very tired and has terrible bone pain and increasing amount of fibrosis (scarring) in her blood marrow.
My point for writing about all this is that I just can't seem to get a handle on what is going on! With cancer and most sickness there is a cause. Something triggered the disease to start up. Then, the cure is, to stop the trigger and treat the disease from that point on with chemotherapy or radiation, or even surgery or medications. The only treatment for MF seems to be hydroxyurea (a pill form of chemotherapy), bone marrow transplant or some clinical trials that test non-FDA approved drugs that are JAK2 inhibitors. The trials offer some hope of a cure, but are far away from us, and hard to get into.
If you are out there in the internet cloud and you have or know someone who has this disease, I would love to hear from you. We need some help and support and some encouragement. Most of what we have read is not very encouraging!
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1 comment:
Hi David, My name is Jackie, I live in cambrideshire, england.
I can understand exactly what you are going through. My husband was diagnosed with MF a couple of months ago. At the same time he was diagnosed with another condition called protein s deficiancy which also affects his blood clotting. He was put on warfarin for his protein s but basically that was it, left in limbo for 2 months with no information other than what we have read on the internet which is quite scary. We are thankful for the many support groups and extensive amount of info on the net.
He has an enlarged spleen and liver, a portal vein thrombosis , portal hypertension and collaterals whatever they may be! He is 40 years old and we have two young children. He is due his next appointment with the hemotolgist next week so hopefully we may have more answers and certainly we have not equipped ourselves with enough information to ask lots of questions.
I know what you mean about other cancers, i have friends with breast cancer and bowl cancer and cannot help but feel they are fortunate at least they have a chance of a cure!
But there do seem to be some positive stories and i am just clinging onto those.
Jackie
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