Myelofibrosis

Hi Pat(Happy?) this is Beloved49(Melanie) I lost this site and just found it today. I quess they want us to use our screen names.
First, how are you doing? I am surprised to see so many people with this problem. You have a perfect right to be upset. What we all face is very hard and if you are alone, it's worse.
I have come to accept this thing that is killing me and have been reading some books I found listed at another site. They help to clear your mind and try to understand what is happening to you. I am still afraid as we all are and angry that there is no cure for me. At 56 I am too old for TBT. If I were young enough I'd go for it. Hope you get this and that I have the right person. Although it does not matter as we all are in the same boat. write if you want to talk.Why can't we exchange email address?

Hello MELANIE and everyone. Melanie I am happy to hear from you again and thank you for your kind words. Melanie and anyone who wants to write me my address is in the 5th letter to Melaine on this message board the hot place means dot com. SMILE people well I hope to hear from someone. Well here I go I had a suprise yesterday I got my teeth cleaned and my gums will not stop bleeding. They don`t know what do so here I am still bleeding am using salt water to wash my mouth the doctor said if it does not stop by 6pm then then they will give me something. So please be careful everyone because with what we have the bleeding is hard to stop. So please keep this in mind and do have a great day. Melanie please can you post the name of the books you are reading? Bye for now Pat

I am having trouble working this message board. I am afraid I do not know what you mean by at the hot spot as being part of your email address. I hope you get this. I have ordered the books. One book is called "Facing Death and Finding Hope" and the other is called (I think) "CutToThe Bone" When I get the books I will tell you the authors names. I have been told that these books help, we shall see. If you can email me, please do. If not I will post you again and look for your post. Till then, be brave my friend. Melanie

Hello All,
Melaine thank you for posting the names of the books. I hope everyone is doing well and you all had a great mother`s day. Have a good week all.

Hi,
I live in Australia and am 63 years old. My myelofibrosis is a secondary condition. In July of 1983 I was diagnosed with Polycythaemia Rubra Vera and told my life span was very limited. As you can see, I am still here and confounding the doctors. My blood disease progressed to Myelofibrosis 3 years ago and there is nothing more they can do for me. My spleen is greatly enlarged and so is my liver. I did have radiation treatment in December 2004/January 2005 and it did shrink the spleen a little but it has all now come back in full force. I think, like in your case, it is harder on my children (I have 5) and grandchildren (I have 14). The biggest help is a positive attitude and a smile. It is not the most comfortable disease under the sun, but I think of people who are worse off than I am when things are really bad. Keep your chin up and take advantage of each day you have with your Mum. It really makes you appreciate every moment so much more. Good luck.
Madelon

I'm 63 and have a greatly-enlarged spleen that shows "abnormal increased uptake" on a PET scan. The radiologist lists both CML and myelofibrosa as his "differential diagnosis." My blood test has both my red blood cell count and my white blood cell count as normal, but my hemoglobin is low (13.1; normal, 13.5-17.5); my hematocrit is low (37.9; normal, 41.0-53.0); my platelet is low (112; normal, 130-400); and, my RDW is a high (15.2; normal, 11.5-14.5).

I am wondering what this suggests to those of you here who have already been diagnosed and who have been going through this.

Hi Madelon, I also have secondary Myelofibrosis. I am 56 years old and before my blood disorder turned into Myelofibrosis I had never heared of this disease. Could you explain why you can not have a stem cell transplantation? I was told that I have either 4,7,and if I am lucky 10 years.My liver and spleen are also greatly enlarged. Hope to hear from you, Melanie

Hi Melanie,
Apparently when you get to a certain stage in the Myelofibrosis process, there is nothing much they can do at all. In my case the bones are just one fibroid mass and they have not been able to aspirate bone marrow for some time. All intervention becomes dangerous because your spleen and your liver do not only perform their normal duties, but they also actually go into the bloodcell production business. This means that your body only manages to produce immature cells and as in my case, it wipes out your immune system so that everything becomes a bit of a drama. All they are doing with me is monitoring the progression of the disease and giving me painkillers for the bone pain. The spleen gives me grief at times as well but not so much as the bones. I have actually been taken off all my meds. I was taking Hydrea 500mg daily, which in itself was a reduced dose but now they feel that it would cause more problems than help. I wish you good luck. Know at least that you are not alone. That was my biggest problem. I just felt so alone and unable to relate to other people. Hope we can help each other through this.
Madelon

Hi Madelon. I am so sorry to hear that you are in much pain. That is what I fear the most. I too am being monitered but I also receive Procrit(?) I have only know of the disease for about 5 months. At first My hemoglobin droped to 7 and I had to have a transfusion. Now with the help of the two Procrit shots every two weeks, it's gone back up tp 10 and my platlets are 150,00. My Docter says that someone up there must like me but he always tells me that it is just a matter of time. He also told me that there was no BMT for my Myelofibrosis. Why I do not know.
When I first learned of this I was so angry and I cried and cried. Boy did I feel sorry for myself. I kept thinking of all the things I would never live to see. Grandchildren, Paris, the world that I had hoped to travel and now never will have the time but enough of that.
Now I give thanks for each day that God gives me. Everything I see takes on new meaning and I keep a journal for my boys.
Most of the time I am in pain from an enlarged liver and spleen. It's not too bad as of yet and I only take Acetami/Cod. It really does not help much but I don't want to become saturated with narcotics till I have to. May I ask what they are giving you for pain and are they good about giving you as much as you need? As I said I am not too good with pain.
I am so glad that we have met as I was truly alone and even my family could not understand what I felt. Sure my Dr. says maybe I will get lucky and live for 7 or 10 years and to me that is just not enough time but I will take it.
I hope that I will hear from you again and that you are not in too much pain. Maybe we can get through this together my friend. I believe that you must have hope so please keep hope close to your heart. I will keep you in my prayers. Till we speak again, take care, Melanie

This is my first time in here and i am so glad to find a place that i can talk to people.
My husband was diagnosed with Myelofibrosis seven weeks ago after a bone marrow test, he had been feeling tired and out of breath, doc did some blood tests and the result of these meant he had to go to hospital.
The same day the bone marrow test was done he was told he had to stay in because he was at risk, over the next few days he was given four units of blood.
Then we went back three weeks later and was told he was to have another 3 units that time he was a day patient in from 8-30 am till 6pm. back again two weeks later and he needed blood again but he now has a high iron content,so they are going to wait another two weeks, but if he gets very tired then we have to go back to hospital quicker.
i'm sorry for going on but like everyone in here all the information i can get is off the internet, but meeting you all in here makes me feel that joe and i are not alone