Myelofibrosis

Am looking to speek to anyone who has myelofibrosis. Please contact me?

Dear Patrica, my name is Melanie and I am 56 years old. I have ihis condition. I have only know about for 3 months. So far my heomglobin is up again fron 7. I have had one transplant,but I am in pain most of time. I think it is my liver and spleen. How can I help you? Beloved49, Melanie

Dear MELAINIE thank you for replying it has been one month and you are the frist person I have heard from so thank you please fill me in with what you know so far you can reach me here. Pat.

Dear Patrica, first of all do you have primary or idopthic Myelofibrosis? Or, like me did you suffer from a previous blood disorder? Myelofibrosis can arise on it's own or be the next step in a blood disorder. Either way, I am afraid it is deadly. Only 2 people in 100,00 get so there is not much research going on. Lucky us.
Scar tissue develops in bone marrow causing the marrow to produce less and less blood cells.
The symptims are many. The main one is tiredness. Others can be diarrhea, night sweats, painful abdomen, fluid retention, vision disturbances ie;spots and blurring. Others are joint pain and bone pain from the marrow expanding into the long bones.
60% of patients with idopathic myelofibrosis have 5 to 7 years but many patients live 10 years or more. I have heard of some who live decades. It all depends on how fast it goes. I know that this is not a pretty picture but it may not be as bad as it seems.
I do not know your age or how long you have had this. There is one cure which is complete bone marrow transplant. This in it's self is very risky. You must be in good health other then the bone marrow disease and have a match.
You should be talking to your Dr. and if he/she will not be open with you, get another one. There is no need for a second opinion.
I learnd most of this on the internet. All you have to do is a google on Myelofibrosis and you will find more than you want to know.
I hope I have helped you. As of now I cannot believe that I have this but for the constant pain in my abdomen. Some days I am really down and cry a lot. I try not to let my children see me but they all know.
I have three wonderful boys who are my life. They give me the strength to go on. I also pray. As of now I am holding my own and that is all I can hope for.
Patrica, I hope that you are not alone in this. I want you to know that you may post me any time you want, to talk and hopefully laugh a bit. I wish you the very best and advise you to speak of you fears with your Dr. Good luck my friend. I hope to hear from you again. Melanie

Dear Melanie,
Thank you again for your letter here is my story am turning 35 on July 26 god willing.
I have no kids no husband and family with me but am strong I do have some good friends. I lost my uterus to cancer two days before my 30th birthday and now this what can I say some girls got all the luck (smile) am happy to be able to share what is happen to me with somebody anybody so thank you I put my email address in but it was remove so am not sure how to get it to you bit if you can read the lines here we go kirton487 at the hot place. Hope you get it. Bye, Pat

I also have myelofibrosis. Was diagnosed a little over a year ago. At first, my Dr. didn't make a big deal about it. Now, she wants me to consider a bone marrow transplant. I have scheduled an appointment with a specialist at the Mayo Clinic. He is one of the few Dr's who specializes in the myeloproliferative disorders with an emphasis on myelofibrosis. He is running some clinical trials. This is one of the most frustrating diseases b/c there is nothing you can "do" to treat it. I have a high platelet count and currently take Agrylin for it. I also have a low hemoglobin count. Everything else is fine ( i.e spleen, liver etc.)

On a final note, I find the rarity of this disease very frustrating. I had never heard of it. Neither have any of my friends and associates. Sometimes I get these blank, overwhelmed looks when I tell people about this. It is like they think I am making this up.

take care
Red56

Hello to all,
I am happy to have found a message board. My Mom was dx about a year ago. I am very scared for her and am trying so hard to find help for her. She finished three weeks worth of radiation for an enlarged spleen last week. Her spleen seems to have shrunk, however today she needed three units of blood which took about seven hours.This was the first time she ever needed blood. She was getting procrit shots and yesturday they told her they were no longer helping and she needed blood instead. On top of that he mentioned that the procit was very expensive. What's up with that? I am located in Orlando does anyone know of some good doctors for this. It is obviously very rare. I just would like to know how much time she has. I dont know what to do. Or maybe it might make her feel better to acually talk to someone going thru the same thing it might help. I'll leave my number if anyone might want to talk. Just leave me a message. Tommorow I am going to contact the Mayo Clinic for her. She is not well enough or young enough (65) to receive a transplant. I just have to find a way to give her a little more comfortable time. Sorry the message is long but thanks to anyone who might respond.

Hello everyone it`s Pat am trying to deal with whats happening the best way i know how everyone around me seem to think am making a big deal. but i don`t think they understand how i feel and when i try talking to them they say am thinking to far ahead.Well i went for a walk a few nights ago and when i return home there was a kit on my bed so i can write what i want to happen when i die i was upset and decided not to tell anyone here what is going on with me anymore i fell so alone please someone tell me am i making a big deal of this i feel like i can`t breath bye for now Pat

You are going thru exactly what my Mom is right now. This morning she had another bone marrow and things dont look good. I never wanted to give into her wanting to tell us everything that she wants us to know because it's almost like I'm telling her it's OK to go if I do. I am sorry you are in this position. It's hard for your family as it is for me to hear a loved one last wishes or thoughts. They seem to be giving you a message by leaving that journal. Write your thoughts and desires. Trust me they want to know as well it's just so hard. Good luck to you.
Love
Cheryl in Orlando

Thank you Cheryla for your words. Am feeling a little better today. How is your mom doing and how are you coping? I will keep your family in my prayers. I do hope everyone who has entered my life on this site is doing fine. Thank you guy and good day. Pat