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.
Hello... I hoped that I could help...
Your post touched my heart, and today I pray for you and your mom. I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis?
I tried to find info at the Mayo Clinic site. I understand a little more, but what was not mentioned is how long a person can have this and how slow or how fast it progresses. In the marrow, from one single morphed stem cell, scar tissue invades creating abnormal, sick, few and overpopulation of various cells... (in a nut shell?) How long does this process take before complications become extreme?
I imagine that initial onset and early symptoms might be fatigue, aches and pains.... can anyone tell me how long this early stage usually lasts? Does it vary?
Thank-you for your time. I love the love between my children and me. How sweet you love for your mother.
In LOVE sincere
AnotherMother