moderator: Myelofibrosis is one of the myelproliferative diseases.
The marrow becomes essentially fibrosed over("scarred") as
fibroblasts over-grow. The infantile hemopoietic organs like the spleen
take over, and of course the erythropoietic drugs encourage that.( It's
better than having endless transfusions.)Itch is characteristic as the
abnormal cells and subtypes casue the release of histamine, serotonin,
and bradykinin in the skin. Scratching until one bleeds is to be
discouraged-- of course it takes enormous self-discipline-- and the
usual approach is to try antihistamines, natural or drug, and
antiserotonin/bradykinin agents, of which there are many. Heat -- like
hot showers-- worsens it. It's not exactly "unbalanced
chemistry", if it were it could be re-balanced. |
|
| I also have myleofibrosis for over a year now and the only thing i have taken medically for it is blood transfusions. I sure need to find out of any other medication that will ease the number of transfusions. Nick | |
| My father was diagnosed with mylofibrosis 2 years ago. last year his spleen was removed at 61/2 pounds. he has taken a drug called hydroxia but it quit working also he has taken procrit shots but did not help either. as of yesterday his hemoglobin was 6.2 and they have my father scheduled for a transfusion this friday. i wish there were other alternatives my father really doesnt like blood transfusions. My father has been a brick layer most all his life. im not real sure how he got mylofibrosis. but my understanding is that it is a cancer in the bone marrow. yet they say a bone marrow transplant is to risky for him. other then that all i know is they say there is no cure. i am looking for any kind of hope that there may be out there any info would be most appreciated thanks. Tonya 9-7-05 | |
| I am 50 years, just diagnosed at the Mayo clinic in Rochester, Minnesota. Right now all I am experiencing is the being tired all the time from the lack of red blood cells, the enlarged spleen, the lack of appetite. The Mayo clinic was very adamant about how dangerous a bone marrow transplant is. My biggest question is with all the medical bills coming in after your company's insurance has paid, what do you do? They are very, very large and like most of us I have no nest egg, large savings account, or rich relatives. I live from paycheck to paycheck and barely make it on that. I have a wife and 2 kids to worry about and don't have any idea where to get help. Anybody got any ideas? Please and thank you. | |
|
|