Myelofibrosis

jubilee
jubilee Member Posts: 1
edited September 2023 in Bone Cancers #1
I was diagnosed at 32 in 2002,and have had a splenectomy and I am currently in remission.is there anyone else out there that has this rare bone marrow disease? its also has other names one being Agnogenic Myeloid Metaplasia ,another is Idiopathic Myelofibrosis or Primary Myelofibrosis...I would like to meet other with this....
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Comments

  • Shery
    Shery Member Posts: 1
    #2
    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
    Beloved49 Member Posts: 1
    #3
    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.
  • lauradeon
    lauradeon Member Posts: 1
    #4
    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!
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #5
    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!

    Hello,

    You may want to consider contacting others you have read about on this discussion board through the internal CSN email system. To learn more about this feature, click on the help button which is located at the top, bottom and on the left hand side of your screen.

    Take care and be well,

    Dana
    CSN Dana
  • MESizelove
    MESizelove Member Posts: 5
    #6
    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.
  • MESizelove
    MESizelove Member Posts: 5
    #7
    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.

    I hope you have had contact with others with myelofibrosis since your posting on 11-27-2004! I was diagnosed August 2000 and have enjoyed "stable" blood counts until this fall. I'm scheduled for another bone marrow biopsy in December and we will see where we go from here.
  • MESizelove
    MESizelove Member Posts: 5
    #8
    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.
  • MESizelove
    MESizelove Member Posts: 5
    #9
    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.
  • cajungirl
    cajungirl Member Posts: 1
    #10
    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!!! :>)
  • suesue555
    suesue555 Member Posts: 25
    #11
    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!

    similar case
    Hello,
    My name is Sue and I have been diagosed with Myelosfibrosis since August 2008. I also can not find any matches for bone marrow transplant. I have also have high blood platelets over 1.2 million. I have been takinng the same medicine as you for 18 years. The doctor had infromed me that by the age of 65 years of age all my bone marrow with deterioted. I also tranformed from ET to Myelosfibrosis I am currently 59 years now. For 2 months I have been taking Canadian and chinese herbs for 2 months. In the middle of January I will know if the herbs have been helping. Feel free to contact me at suesue555@hotmail.com I am looking forward from hearing from you.
  • suesue555
    suesue555 Member Posts: 25
    #12
    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
    suesue555 Member Posts: 25
    #13
    cajungirl said:

    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!!! :>)

    Myelofibrosis
    Cajungirl: How is your husband? I love to talk to you if you can read this email.
    My e mail address: suesue555@hotmail.com
    Take care!
    sue
  • Unknown
    Unknown
    #14
    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.

    This comment has been removed by the Moderator
  • attoni
    attoni Member Posts: 2
    #15
    cajungirl said:

    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!!! :>)

    MYELOFIBROSIS
    HOW IS YOUR HUSBAND DOING? I ALSO HAVE MYELOFIBROSIS AND I AM 56. IT IS SCARY. MY COUNT WAS DOWN THIS WEEK TO 8.7. MY DR IS VERY CONCERNED AS SHE SAID IF IT GOES BELOW 8, I NEED TO EITHER TAKE PILLS, WHICH IS THE FIRST OPTION TO TRY TO BUILD UP RED COUNT OR IT IT DOESN'T WORK, THEN TRANSFUSIONS. SHE WANTS MY BROTHERS CHECKED FOR POSSIBLE BONE MARROW DONERS. DID YOU HUSBAND GO TO A SPECIALISTS, LIKE SLOAN OR CORNELL? I WENT TO SLOAN IN NY FOR A 2ND OPINION AND RESULTS WERE THE SAME AS MY DR IN NJ. I FELL HEALTHY OTHERWISE EXCEPT FOR BEING TIRED LATELY. IT JUST SEEMS LIKE SOMETHING THAT IS UNREALISTIC AT THIS POINT.
  • stavan
    stavan Member Posts: 4
    #16
    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
    Still Here Member Posts: 2
    #17
    stavan said:

    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?

    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"..
  • stavan
    stavan Member Posts: 4
    #18
    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
    Still Here Member Posts: 2
    #19
    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?
  • suesue555
    suesue555 Member Posts: 25
    #20
    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
  • Unknown
    Unknown
    #21
    suesue555 said:

    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

    This comment has been removed by the Moderator

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