Myelofibrosis

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  • Lachelle Taylor
    Lachelle Taylor Member Posts: 1
    #82
    lahicks said:

    Primary Myelofibrosis
    I was recently diagnosed i am 34 with 3 kids my spleen in enlarged and so is my liver. I really do not know much about this disease could anyone give some advice of things to look for our ask about in my doctors appointment?

    My husband was diagnosed at

    My husband was diagnosed at the age of 40. They gave him a 50% chance to make it two years and it's 2015 and hes still here. When he was diagnosed we had a baby girl that was 10 mind old very devastating. His Dr has been wanting him to take thalidomide for well over a year but do to side affects he refused. Now his blood count has dropped to an 8 kidney failure has occurred and liver count is high. Three mons ago he decided to try thalidomide his spleen is over a foot long. Dr said they are just hoping it shrinks the spleen. Well after the first month he got every side affect to this chemo drug the second month the dose was half it continued to worsen him they lowered that dose for third month and things are worse no change to spleen size. Some of the stuff I have read makes me think when getting diagnosed thalidomide would have been better to take not a dr.. Now to the point he needs a transplant but no match plus he needs his spleen removed first and do to the size they can't remove it I don't know now really what's going on he gets blood drawn every week. I honestly still don't know much about this disease other than I know it makes a person suffer severely with pain and then TORTURED of not knowing if your gonna wake up

     

  • Georger
    Georger Member Posts: 2
    #83
    Lachelle Taylor said:

    My husband was diagnosed at

    My husband was diagnosed at the age of 40. They gave him a 50% chance to make it two years and it's 2015 and hes still here. When he was diagnosed we had a baby girl that was 10 mind old very devastating. His Dr has been wanting him to take thalidomide for well over a year but do to side affects he refused. Now his blood count has dropped to an 8 kidney failure has occurred and liver count is high. Three mons ago he decided to try thalidomide his spleen is over a foot long. Dr said they are just hoping it shrinks the spleen. Well after the first month he got every side affect to this chemo drug the second month the dose was half it continued to worsen him they lowered that dose for third month and things are worse no change to spleen size. Some of the stuff I have read makes me think when getting diagnosed thalidomide would have been better to take not a dr.. Now to the point he needs a transplant but no match plus he needs his spleen removed first and do to the size they can't remove it I don't know now really what's going on he gets blood drawn every week. I honestly still don't know much about this disease other than I know it makes a person suffer severely with pain and then TORTURED of not knowing if your gonna wake up

     

    MF

    I read your post and it sounds word for word like my situation. Because my blood counts go off the normal very fast, my doctor has me do CBC blood test every week and I get a shot of 14000 units of procrit every friday.  This brings my Hemoglobin back up above subnormal (10).Talk to your doctor about Procrit.

    I am 78 years and have gone through all the other B.S. they like to throw at you.  My shots are the only thing keeping me on my feet.

    Good luck

    Geprge

  • Rich1313
    Rich1313 Member Posts: 1
    #84
    Archie said:

    Looking for news

    I was diagnosed on april 2012 with MF. I tried all the usual drugs they like to give you orally or intravenous, all of no help except Jackafi` which reduced my spleen size. 

    The down side to Jackafi is that it lowered my Hemoglobin numbers to the point at which I required a blood transfusion about every five weeks.  I soon got off the Jackafi and am taking nothing.  There is no doctor in my area that knows anything about the disease and at 77 yrs old I have decided to ride it out as it comes.

    In addition to this disease I have stage 3 Kidney disease, I am prone to blood clots and suffer from enlarged Spleen, Hemolytic Anemia and Heart disease.

    I scan the the comments just to see if there is any thing new on the subject.

    Secondary Myelofibrosis we

    Hi Archie,

    We sound like we are pretty much in the same boat. I am 76 and have secondary Myelofibrosis which is the same prognosis as Primary Myelofibrosis. Both have a prognosis of about 3 years from your first diagnosis. My diagnosis was about 2 years ago. WBC 44,000 and increasing at the rate of 1500 per month. I also will not take Jakafi as my hematologist told me it will not cure or extend my life. It will, howeve, eleviate my symptoms. So far my symptoms are tolerable. My spleen is a bit over 17cm. but also doesn't trouble me. My appetite is fine. I have it myself on a different kind of diet with certain supplements and foods like cottage cheese blended with  flaxseed oil and asst.fruits. I also have a cancer on my kidney which is stage 1 but growing at the rate of .5cm a year. I figure the Myelofibrosis will get me before the kidney cancer. Unfortunatel, our disease is rare which means Big Pharma isn't rushing to find a solution. Not enough $$$ for them. 

    I wish the best of luck. Keep in touch we can share battle stories.

     

  • AngCantrell
    AngCantrell Member Posts: 1
    #85
    Bone Marrow Transplant

    Feb 28th was the day I was told that I have secondary MF.  (I have had Polycythemia Vera since 2008.)  My hematologist/oncologist immediately suggested that I have a BMT.  I am 55 and have a very enlarged spleen.  Is there anyone here who has had a BMT?

  • bkdcb
    bkdcb Member Posts: 1
    #86
    Dalt said:

    I was diagnosed with advanced

    I was diagnosed with advanced MF in December 2009. I heavily dosed on oral vitamin c and selenium along with bi carb and received an all clear on February 01 2010 (six weeks). Others have followed what I did and received an all clear in a short period. It seems vitamin c/selenium and bi carb doesn't cure the disease, but it certainly stops it in its tracks and allows MF sufferers to live a normal live. It is three years now since my all clear. I still take vitamin c/selenium and bi carb every day as I don't want MF to return. I can be contacted at intouch9 (at) bigpond.net.au as I have a lot of research and can supply the type of vitamin c and selenium I used.

    myelofibrosis - vitamin c protocol question

    MY HUSBAND WAs diagnosed 6 months ago with MF - is on Jakafi - RBC have dropped to 7.5 but spleen is greatly reduced b/c of the Jakafi.  Would like information on the vitamin c /selenium/bicarb protocol. How much - what kind - when to take.  Any info would be appreciated.

  • MFISTERRIBLE
    MFISTERRIBLE Member Posts: 2
    #87
    DNeal said:

    I was diagnosed in May.
    I was diagnosed in May. I'm trying to come to grips with whether to get a Stem Cell transplant or wait until my condition worsens which is one opinion. Can I ask why you didn't pursue a transplant ?

    Outcome please

    Hi DNeal,

     

    I have recently been diagnosed with MF and I am tryng to come to terms with it. I am 38 and much like you trying to decide whether or not to pursue a transplant or not. I have four young children, so feeling desperate. Please let me know how if worked for you if you would not mind. My email address is halkerston5@gmail.com if you can offer ANY advice it would be greatly appreciated.

    Regards,

    Glen Halkerston.

  • MFISTERRIBLE
    MFISTERRIBLE Member Posts: 2
    edited October 2017 #88
    vickiroz said:

    vicki

    my husband was told he has it last jan,he has lost weight allready ,but doctor says he could live for 15, 20 years and he told me to stop reading what i hear on the internet after i tld him it says you will not live for more then 2 or 3 years,we do not know when this will get bad or when he will need meds,i just pray they would find a cure,i am now looking up in the vitamin c thats suppose to help,so i am making him take it anyways,cant hurt hey? keep me posted on any new news and how you are doing

    Hi vicki,

    Hi vicki,

     

    Please can you tell me any information or assitance/research you have found.  I have recently been diagnosed and it is scarying me!! I have four young children, so willing to try anything. Thank you for your help and any one else's.

    Regards,

    Glen Halkerston.

  • bella345
    bella345 Member Posts: 2
    #89
    I was diagnosed with

    I was diagnosed with Mylefibrosis almost a year ago.  I am almost 75 and am on oral chemo (hydroxurea).  I go in every three months for a blood check but I am scared.  There is no way to fix this and I don't know when it will kill me.  

     Have they suggested a Bone Marrow Transplant?

  • bella345
    bella345 Member Posts: 2
    #90
    Lachelle Taylor said:

    My husband was diagnosed at

    My husband was diagnosed at the age of 40. They gave him a 50% chance to make it two years and it's 2015 and hes still here. When he was diagnosed we had a baby girl that was 10 mind old very devastating. His Dr has been wanting him to take thalidomide for well over a year but do to side affects he refused. Now his blood count has dropped to an 8 kidney failure has occurred and liver count is high. Three mons ago he decided to try thalidomide his spleen is over a foot long. Dr said they are just hoping it shrinks the spleen. Well after the first month he got every side affect to this chemo drug the second month the dose was half it continued to worsen him they lowered that dose for third month and things are worse no change to spleen size. Some of the stuff I have read makes me think when getting diagnosed thalidomide would have been better to take not a dr.. Now to the point he needs a transplant but no match plus he needs his spleen removed first and do to the size they can't remove it I don't know now really what's going on he gets blood drawn every week. I honestly still don't know much about this disease other than I know it makes a person suffer severely with pain and then TORTURED of not knowing if your gonna wake up

     

    I have Mylefibrosis

    I undrstand your feelings about not knowing if you are going to wake up or not.  It is not a disease I would want anyone to have.  My prayers are with you and your family.  Take it a day at a time.

  • Senthilk7
    Senthilk7 Member Posts: 2
    #91
    Dalt said:

    I was diagnosed with advanced

    I was diagnosed with advanced MF in December 2009. I heavily dosed on oral vitamin c and selenium along with bi carb and received an all clear on February 01 2010 (six weeks). Others have followed what I did and received an all clear in a short period. It seems vitamin c/selenium and bi carb doesn't cure the disease, but it certainly stops it in its tracks and allows MF sufferers to live a normal live. It is three years now since my all clear. I still take vitamin c/selenium and bi carb every day as I don't want MF to return. I can be contacted at intouch9 (at) bigpond.net.au as I have a lot of research and can supply the type of vitamin c and selenium I used.

    my wife aged 33 has recently been digonested with MF

    Hi Dalt, 

    my wife aged 33 has recently been  digonested with MF, she has a slighley enlarged spleen , she has no medication but 2 units  blood tranfustion 3 weeks ago 

    can you hlep us with deatils of how you took vitamin c/selenium and bi carb ? 

     

    regards

    senthil 

  • Senthilk7
    Senthilk7 Member Posts: 2
    edited March 2018 #92
    my wife aged 33 has recently been digonested with MF

    Hi Dalt, 





    my wife aged 33 has recently been  digonested with MF, she has a slighley enlarged spleen , she has no medication but 2 units  blood tranfustion 3 weeks ago 

    can you hlep us with deatils of taking vitamin c/selenium and bi carb ?  does that help ?

     

     

     




  • ranisharma
    ranisharma Member Posts: 5
    #93
    myelofibrosis

    Primary myelofibrosis (also called chronic idiopathic myelofibrosis, agnogenic myeloid metaplasia) is a disorder in which normal bone marrow tissue is gradually replaced with a fibrous scar-like material. Over time, this leads to progressive bone marrow failure.

    Under normal conditions, the bone marrow provides a fine network of fibers on which the stem cells can divide and grow. Specialised cells in the bone marrow known as fibroblasts make these fibers.

  • Kat12
    Kat12 Member Posts: 1
    edited February 2021 #94
    Hi

    Hi! My mom has recently been diagnosed with MF. She is 59 years old. Based on her signs her life expectancy median has been set to 4y. She asked me if I can find someone who has been struggling with the same for years and can share some experience with her in terms of the treatment and life style. We live in a small country where not lot of people fight with the same. Thank you !

  • winnie421
    winnie421 Member Posts: 1 *
    edited September 2023 #95

    Hi, I am new to this site. I hope your Mom doing ok. My husband just recently diagnosed in May and began Jakafi six weeks ago. He began with severe fatigue now has shortness of breath, we thought related to Jakafi but a CT revealed pulmonary hypertension. Induced by Jakafi? , dont know. We are waiting to see his cardiologist who just saw him recently and did not notice this on EKG?? He has been pretty active up until the last few months. He is 68. I do not know where your Mom is in this struggle, but if you would lIke to compare notes, you can reply here. (content removed by CSN Support Team). This is a very rare blood disorder but I am reading about a drug up for next action in just two weeks that was created in UK. One in every 250,000. have MF. To really blow your mind I was just diagnosed last Oct. with cancer of the appendix (1 per million) . My son diagnosed same week with thyroid cx. We are both ok for now. My husband , not so much. Best wishes, Wendy

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