Myelofibrosis

My fiance was diagnose with Myelofribrosis in 1995. He is currently blood monitoring. (platelet are plentiful! Hemoglobin is falling...currently 93) He will have a BMT (brother is the donor, most thankful for the match) when the Dr. decides it is time. His spleen is still intact and they will take it out in prep for BMT or before if it gets bigger. So far, his counts seem to be falling at a steady pace, but we pray every day for advancement in BMT's. They say the minute his hgb hits 80 (I question that, apparently if you require tranfusions, it weakens the immune system) he will be set up for the transplant. Brad is 48 in a few weeks. He works (an electrician so long days) and only seems to be mildly tired. As he puts it, "I only take one stair at a time instead of 2". Brad doesn't much like to discuss his MF, however if you have any questions that I can help you with, or even as outside support, I would be happy to.
Shery

Beloved49 said:

Hi, I am Beloved49. I was just diagnosed with Myelofibrosis last Friday. They do not know how long I have. I am 56 years old. What awaits me? I do not know what to do.

Hi! I was diagnosed with Myelofibrosis in 2000. I wasn't able to get a bone marrow transplant because I wasn't able to find any matches. I have a very rare antigen. I had platelets over a million. The doctor said I had Essential Thrombocythemia (ET). I then had a bone marrow biopsy and he said I had myelofibrosis. The doctor put me on Hydrea. I am currently on Anagrlide (Agrylin). I have been having problems keeping my platelets down. I am currently taking 6 pills of Agrylin a day. Each pill is 0.5 mg. My white and red are fine now, usually at the top level. I will be 41 this year. I guess everyone is different. This is the first time I have been on any support site. I would be happy to talk to anyone with this disease. Thanks!

lauradeon said:

Hi! I was diagnosed with Myelofibrosis in 2000. I wasn't able to get a bone marrow transplant because I wasn't able to find any matches. I have a very rare antigen. I had platelets over a million. The doctor said I had Essential Thrombocythemia (ET). I then had a bone marrow biopsy and he said I had myelofibrosis. The doctor put me on Hydrea. I am currently on Anagrlide (Agrylin). I have been having problems keeping my platelets down. I am currently taking 6 pills of Agrylin a day. Each pill is 0.5 mg. My white and red are fine now, usually at the top level. I will be 41 this year. I guess everyone is different. This is the first time I have been on any support site. I would be happy to talk to anyone with this disease. Thanks!

I too was diagosed with Mylefibrosis in 2000 and have enjoyed 4 years of "stable" blood counts until early this fall when the counts seemed to take a nosedive. Up to now we have been in "watch and wait" mode. I will be having another bone marrow biopsy in Dec and we will see where we go from there. Yes, it seems that everyone has a slightly different pattern. I am 61 and worked full time (State Employee) for three years after diagnosis. I am VERY happy to be retired for a year now.

Beloved49 said:

Hi, I am Beloved49. I was just diagnosed with Myelofibrosis last Friday. They do not know how long I have. I am 56 years old. What awaits me? I do not know what to do.

There is a lot of information available about median longevity from diagnosis - but if it is published it is probably out of date. What you can expect depends on what symptoms you have now. The norm is for fluctuating blood counts with a generally downward trend. I was 57 when I was diagnosed August 2001 and have enjoyed 4 years of "stable" counts - HGB around 11 or 11.5 - until this fall. Sept was 9.9 and Nov was 9.2. I'm going back for another bone marrow biopsy and CT scan on Dec 15th. Did you have a bone marrow biopsy and Ct Scan? When will you see your hematologist/oncologist again? As for what to do: learn all you can about myelofibrosis; find a support group (I attend a general cancer group as well as a Leukemia, Lymphoma group); and plan some fun happenings. When I was diagnosed we updated our wills, drew up legal and medical power of attorney and updated our living wills. We are prepared for anything - but will never be ready. And we are now planning the vacation of my dreams for next summer.

lauradeon said:

Hi! I was diagnosed with Myelofibrosis in 2000. I wasn't able to get a bone marrow transplant because I wasn't able to find any matches. I have a very rare antigen. I had platelets over a million. The doctor said I had Essential Thrombocythemia (ET). I then had a bone marrow biopsy and he said I had myelofibrosis. The doctor put me on Hydrea. I am currently on Anagrlide (Agrylin). I have been having problems keeping my platelets down. I am currently taking 6 pills of Agrylin a day. Each pill is 0.5 mg. My white and red are fine now, usually at the top level. I will be 41 this year. I guess everyone is different. This is the first time I have been on any support site. I would be happy to talk to anyone with this disease. Thanks!

Hi!! My husband was diagnosed with Myelofibrosis 2 yrs. ago. He is 48 yrs. old. How are you doing? Any improvement? Do you have any symptoms? I know that you are looking for someone to talk with that has this disease but I would love to talk with someone that just knows what I am talking about. Thanks!!! :>)

MESizelove said:

I'm interested in your statement regarding remission. Since I was diagnosed Aug 2001 I have done extensive research and have read nothing about possible remission. Please tell me more.

Myelofibrosis
MeSizelove/any one

I hope you still can read this message, I need to know any one have Myelofibrosis
over five years to talk to me. Is there any hope ?

suesue555 said:

Myelofibrosis
MeSizelove/any one

I hope you still can read this message, I need to know any one have Myelofibrosis
over five years to talk to me. Is there any hope ?

myelofibrosis
Hi, i was just diagnosed 2 days ago. I am 32 years old. very scared. i have 3 children. Did anyone respond to you about having myelofibrosis for over 5 years. In every thing i read that's what i see but it seems like very few people live longer i guess it depends on the person. How are you doing now?

Still Here said:

myelofibrosis
Hi, Just wanted to give you hope, I was diagnosed in 1999 at the age of 45. Was told that I only survive 5 years, I am still here & just started to see changes in my blood work. I have a large spleen & the white count is in the 50,000 but other then that, I work & do everything that my body lets me do. If I never gone to the doctor 10 years ago. I would not think there is anything wrong with me... My red & platelet count is normal. Hope this gives you "faith"..

Myelofibrosis
Thank you, this makes me feel a lot better. I'm just praying it goes as well for me. Are you taking any medication? I am not right now but my platelet is high and hemoglobin 10, other than that i feel fine. Please keep in touch let me know how you are doing. Again, Thank you for responding.

Still Here said:

Myelofibrosis
Hi Stavan,
I am still not taking medications. I go to the doctor every 3 months but as of Tuesday, I am going to a new dr. because mine has left the state. I will see what they have in store for me. My hemoglobin has been OK tho the red count is down in the low normal, I started taking vitamins with iron. It is just the white count & enlarge spleen that is the problem. There is a good website about the disease from mayo clinic. My doctor told me years ago not to believe everything you read on the internet but is hard to stay off when there is no one to talk to.. Keep in touch. I will let you know what the new Doctor says. Where do you live?

Myelofibrosis
Still Here and Stavan:
If you go to the Discussion Boards, Long term effective, Myelofibrosis
there are few people post their comment and new medicine.........
I am so glad Still here is still here, that is what I like to know too,
My chinese herbal medicine cancer specialist has been given me chinese medicine
that will help my spleen keeps normal, so far, I have not have found any doctor treated
Myeloffibrosis yet, my blood specialist is only given me the same medicine for
my high blood planate, which I have been taking for last 19 years.............
Regards
suesue