Myelofibrosis

Hello,

 Please recommend an hematoligist in Philly, New Orleans, Baton Rouge and Jackson, Ms.  Thank you so much.  We need these recommendations as soon as possible.  Thanks! 

On 8/22/2008 rjs2345 wrote:

Hello,

 Please recommend an hematoligist in Philly, New Orleans, Baton Rouge and Jackson, Ms.  Thank you so much.  We need these recommendations as soon as possible.  Thanks! 

Please let me know if you have determined that myleofibrosis is in fact cancer of the bone or could eventually be bone cancer.  I wish I could hlep you.  My best answer, from experience, is get to Mayo Clinic in Florida.  They are first class, honest, the best with the latest technology.  They are not inexpensive, however.  Best wishes, Sue Denney

Myleofibrosis is not actually bone cancer. The bone marrow is unable to make enough red cells, white cells and or platelets. The marrow also produces abnormal dysfunctional cells that do not mature. Marrow Transplants, Blood Transfusions, and Chemotherapy are some options for treatment.

 My mother has Myleofibrosis and Myleodysplasia. Her illness has become more progressed over the past 4 years and she wouldn't survive a bone marrow transplant. She just gets blood and platelet transfusions weekly and has counts as low as 9-platelet and 19 to 21 rbc. Antibodies and antigens are building up in her blood, this can eventually cause the transplants to fail. There is nothing more than can be done for her. She refused Chemo. So the transfusions just keep her quality of life much better. She is usually very tired, but sometimes she will still have a particularly energetic day.

Her abdomen is distended because her spleen has enlarged because of all the transfusions. Otherwise she is very thin.