On 2/19/2008
JuJusdaughter wrote:
I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away!
My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options? She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share.
Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!
Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.
There is a company called Incyte that is in the late phases of trials for a JAK2 inhibitor that has shown "rapid and profound clinical benefits in Myelofibrosis patients."
http://investor.incyte.com/phoenix.zhtml?c=69764&p=IROL-
Hopefully, the inhibitor will pass trials and become available soon. Other than that, there is no truly effective treatment besides a bone marrow transplant. Focusing on quality of life is most important.
As for the nose bleeds, my mother had them but I don't recall it being as serious as what you describe. I would discuss it with her doctor on the next visit.