Myelofibrosis

MESizelove
MESizelove Member Posts: 5
edited March 2014 in Rare and Other Cancers #1
I would like to make contact with other patients with Myelofibrosis. I was diagnosed in Aug 2001 and have enjoyed 4 years of "stable" blood counts (hemaglobin around 11) until this fall when they began to drop. HGB 9.9 end of Sept and 9.2 beginning of Nov 2005.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the CSN website (with the search bar at the top of this page) using the search term myelofibrosis. If you find an individual you would like to contact you can do so through the CSN internal email system.

    I wish you well,

    Dana
    CSN Dana
  • saraholly24
    saraholly24 Member Posts: 1
    #3
    hello
    hello my father was diagnosed with myelofibosis in october. He has progressed very rapidly to a platelet count of 14,000 now. Please write me back I would like to know of any treatments you have recieved etc. Thank you so much God Bless
  • grams1
    grams1 Member Posts: 1
    #4
    saraholly24 said:

    hello
    hello my father was diagnosed with myelofibosis in october. He has progressed very rapidly to a platelet count of 14,000 now. Please write me back I would like to know of any treatments you have recieved etc. Thank you so much God Bless

    myelofibrosis
    I was diagnosed with idiopathic myelofibrosis in September of 2009. My blood count was at 5. I have now had a bone marrow transplant and am recovering from that. It is a very long process but I am hopeful that it will cure me. I was told that the transplant was my only hope. Grams1
  • pbandy34
    pbandy34 Member Posts: 1
    #5
    July 2009
    I was diagnosed in July of 2009 with Primary Myelofibrosis. I am currently being transfused with hemoglobin about every 3-4 weeks. My platelet count has just dropped to 870K from 1.2M thanks to Busulfane. My Hematologist is trying to avoid a bone marrow transplant at all cost right now.
  • momarandme
    momarandme Member Posts: 1
    #6
    grams1 said:

    myelofibrosis
    I was diagnosed with idiopathic myelofibrosis in September of 2009. My blood count was at 5. I have now had a bone marrow transplant and am recovering from that. It is a very long process but I am hopeful that it will cure me. I was told that the transplant was my only hope. Grams1

    myelofirosis with Bone Marrow Transplant
    Hi. 1st time user here.
    I have MDS and I am a candidate for BMT. However, the risks are high regardless of having or not having. Afraid of the BMT. Any words of wisdom? Where did you go? I know all about it from the books, pamphlets, and doctors/R.N. Is it worth it regarding quality of life issues? Any suggestions from someone who has started the BMT?

    My hematologist is treating me with Vidaza injections currently. He wants me to have a BMT if I can find a matched donor.
  • ms_survivor
    ms_survivor Member Posts: 6
    #7
    momarandme said:

    myelofirosis with Bone Marrow Transplant
    Hi. 1st time user here.
    I have MDS and I am a candidate for BMT. However, the risks are high regardless of having or not having. Afraid of the BMT. Any words of wisdom? Where did you go? I know all about it from the books, pamphlets, and doctors/R.N. Is it worth it regarding quality of life issues? Any suggestions from someone who has started the BMT?

    My hematologist is treating me with Vidaza injections currently. He wants me to have a BMT if I can find a matched donor.

    Don't Worry
    I am 5 months post bone marrow transplant and starting to feel like myself again. I had my BMT at the University of Chicago. I was lucky to have an unrelated perfect, genetic match in the Bone Marrow Registry. I have six siblings and none were a match. Thank God for people out there willing to donate for a transplant. The BMT was tough, but so worth the results. Pray and keep up a positive mental attitude and you will get through this. A BMT can be curative and you can live a normal life again. Last year, I had over 50 transfusions. Haven't had one now since October. You can do this.
  • dianne428
    dianne428 Member Posts: 3
    #8
    ms_survivor said:

    Don't Worry
    I am 5 months post bone marrow transplant and starting to feel like myself again. I had my BMT at the University of Chicago. I was lucky to have an unrelated perfect, genetic match in the Bone Marrow Registry. I have six siblings and none were a match. Thank God for people out there willing to donate for a transplant. The BMT was tough, but so worth the results. Pray and keep up a positive mental attitude and you will get through this. A BMT can be curative and you can live a normal life again. Last year, I had over 50 transfusions. Haven't had one now since October. You can do this.

    worried
    I was diagnosed with MF SINCE 2007.In 2009, all the symptoms appeared: Large spleen, counts dropped drastically, petechia all over my body and face, lost 30 pds!.
    I tried everything, from revlimid to radiation . I am transfused every 5 days.
    Thankfully I have a perfect match form a sibbling and I am being evaluated now for a BMT.
    I am tired and really done with transfusions. I am hoping the BMT works for me! Thanks ms_survivor, you gave me hope.
  • ms_survivor
    ms_survivor Member Posts: 6
    #9
    dianne428 said:

    worried
    I was diagnosed with MF SINCE 2007.In 2009, all the symptoms appeared: Large spleen, counts dropped drastically, petechia all over my body and face, lost 30 pds!.
    I tried everything, from revlimid to radiation . I am transfused every 5 days.
    Thankfully I have a perfect match form a sibbling and I am being evaluated now for a BMT.
    I am tired and really done with transfusions. I am hoping the BMT works for me! Thanks ms_survivor, you gave me hope.

    BMT
    Dear Dianne: Just wondering if you got your transplant an d he it went? Hope you are doing well. I will be going in for a second transplant next month.. Got to be easier this time. At least I know what to expect.
  • sherrilb
    sherrilb Member Posts: 1
    #10
    my brother who is 52 was

    my brother who is 52 was diagnosed with myelofibrosis in Feb.at the time they found it his blood was down to 2.7 .Our problem is this.he has Humana {Medicare}insurance and they are refusing to pay for a transplant.this is his only option of survival at this point.does anyone know where we can get help....thank you

     

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