Myelofibrosis and CML 190

kathleen@thehelmings.com
kathleen@thehelmings.com Member Posts: 1
in Leukemia #1
My husband Joe has both of these rare blood marrow cancers. Anyone know about Leukemia 190? I can't find much about it. My husband is on Gleevec and it decreased the size of the spleen, but now it is back to its original size. Any comments about bone marrow transplants? They have suggested this at some point in time. So far it is the only treatment that could possibly cure myelofibrosis.

Comments

  • nempark
    nempark Member Posts: 681
    #2
    HI :
    So sorry to hear about your husband's dx. I do not know anything about this disease but my daughter was dx with Acute lymphoblastic Leukemia in 11/2011. First of all her initial treatment did not work for her the chemo she was given the cancer fought it back so she relapsed and is now being given a stronger regimen which is not an easy journey. We are hoping and praying that after a bone marrow test that this dreaded monster will be gone. It is definite not easy to see your loved one dx with Cancer. But we all have to remember that this is all part of life and never think that it can hit us. The circumstances, the tears, the concerns, the fears but sit still and know that we will not have immediate answers but we will persever and push through to get through and not give up or give in but Hang on. I am sure your Doc will recommend Chemo. Chemo's journey is not easy but it is definitely doable. Keep strong for your husband and family and you will see things clearer once you both get over the initial shock. I hope our great Creator God give you all the strength, courage, endurance and wisdom to make the right decisions. My best to you all and please don't forget you are not alone in this journey. Best regards, please write and let me know how you are doing. J
  • Unknown
    Unknown
    #3
    Myelofibrosis
    Dear Kathleen,
    I am Mimi from Southeast Louisiana, happily married for 20 yrs, 62 y/o. I was dx'd with MF a year ago. Prior to that, I had Polycythemia Vera (dx'd with PV back in 2000). PV is one of the MPN's--a rare bone marrow cancer and Joe has MF (myelofibrosis)My case slowly has progressed to MF. Upon initial dx, I was treated with phlebotomy only which is basically the same act as donating blood and is the normal way of treatment, if it works for you. I had regular weekly phlebotomies for a period of abt 3 months, after that it was on an as needed base, determined by a CBC blood test every 2 weeks. This test is the major factor by which your treatment protocol is decided.
    Anyway, now, to cut it short, I know nothing abt leukemia 190 and can't help you there. But I can speak to you abt MF. Gleevec is one of the main medications used in the treatment of any of the MPN's and it is very effective. However, as you are just getting to learn abt Joe's condition, I will tell you that all cases are completely different from one another, therefore, the treatment will vary from patient to patient. I was never treated with Gleevec, though I had many friends who were treated with Gleevec. About 6 yrs into my illness, the phlebs stopped being effective on me and I was then placed on Hydrea, 500 mg's daily. This protocol was very effective for me until last year. My spleen started to enlarge. It got to 25.4 cm's. I had an ultra sound of the spleen to determine the size which lead to raising my Hydrea from 500 mg's daily to 1500 mg's daily and I am ding quite well on this new protocol.
    I would love to have a phone chat or be in touch via email. I am also a member of the LLS (Leukemia and Lymphoma Society) and stay in contact with all my "bloody Buddies" at that site. The discussion blood at the LLS has been a Godsend for me, and I've made some great and very close friends there who I stay in contact a lot with via email.
    There is also another excellent site that is interactive called MPD Digest. Robert Tollen runs that site. It comes in every night around 9 PM and is packed with tons of different sorts of info, all very helpful.
    I would like to be of more help to you and your husband, especially as y'all are so new to the disease. I have loads of stuff to talk to u abt, but I can't do it all in one post! MIMI
  • sudhir2884
    sudhir2884 Member Posts: 3
    #4
    unknown said:

    Myelofibrosis
    Dear Kathleen,
    I am Mimi from Southeast Louisiana, happily married for 20 yrs, 62 y/o. I was dx'd with MF a year ago. Prior to that, I had Polycythemia Vera (dx'd with PV back in 2000). PV is one of the MPN's--a rare bone marrow cancer and Joe has MF (myelofibrosis)My case slowly has progressed to MF. Upon initial dx, I was treated with phlebotomy only which is basically the same act as donating blood and is the normal way of treatment, if it works for you. I had regular weekly phlebotomies for a period of abt 3 months, after that it was on an as needed base, determined by a CBC blood test every 2 weeks. This test is the major factor by which your treatment protocol is decided.
    Anyway, now, to cut it short, I know nothing abt leukemia 190 and can't help you there. But I can speak to you abt MF. Gleevec is one of the main medications used in the treatment of any of the MPN's and it is very effective. However, as you are just getting to learn abt Joe's condition, I will tell you that all cases are completely different from one another, therefore, the treatment will vary from patient to patient. I was never treated with Gleevec, though I had many friends who were treated with Gleevec. About 6 yrs into my illness, the phlebs stopped being effective on me and I was then placed on Hydrea, 500 mg's daily. This protocol was very effective for me until last year. My spleen started to enlarge. It got to 25.4 cm's. I had an ultra sound of the spleen to determine the size which lead to raising my Hydrea from 500 mg's daily to 1500 mg's daily and I am ding quite well on this new protocol.
    I would love to have a phone chat or be in touch via email. I am also a member of the LLS (Leukemia and Lymphoma Society) and stay in contact with all my "bloody Buddies" at that site. The discussion blood at the LLS has been a Godsend for me, and I've made some great and very close friends there who I stay in contact a lot with via email.
    There is also another excellent site that is interactive called MPD Digest. Robert Tollen runs that site. It comes in every night around 9 PM and is packed with tons of different sorts of info, all very helpful.
    I would like to be of more help to you and your husband, especially as y'all are so new to the disease. I have loads of stuff to talk to u abt, but I can't do it all in one post! MIMI

    Medicine to reduce spleen size
    Hi,

    Can you please tell me any medicine which help in reduction of spleen size ?

    thanks...
  • louisejane
    louisejane Member Posts: 5
    #5
    sudhir2884 said:

    Medicine to reduce spleen size
    Hi,

    Can you please tell me any medicine which help in reduction of spleen size ?

    thanks...

    I don’t have any idea
    I don’t have any idea about this but I can recommend you to my friend who is expert in medication. I would still look for a training that can give me phlebotomy certification courses and hopefully I can fulfill my dreams.
  • kabillies
    kabillies Member Posts: 2
    #6
    hello everybody out there ..i

    hello everybody out there ..i have or had myleofibrosis ...was diagnosed last year in august...needed a blood transfusion right away and then five days  later just before i left the hospital...it wasnt completely diagnosed by then but the blood doctor gave me a heads up and said i think you may have myleofibrosis ...just on the data that was coming back from my bone marrow biopsy....went home after this which was 140 miles away and got my appointments lined up ..started on a regimen of juicing ...kangen or alkaline water ..whole foods ..i had been on a diet of whole foods no processed no sugar..and by that i mean no white sugar...and no diet crap like pops or sauces..basically had my system in not too bad of shape for the fight i was about to start with my cancer...seen my local oncologist and asked about some of my problems with this cancer and basically was told your transfusions were too close together to do much about it...i was getting blood every week and then lengthened that to every two weeks..my record was 21 days without a transfusion...kept up my regimen and added supplements green matcha tea...started eating foods that were conducive to helping hemoglobin be produced...and stayed away from foods that were not conducive to helping my blood count...the one thing that amazed my doctors is that i had no symptoms that the cancer usually produces in its people...went approximately six months going in for transfusions seeing the doctors ..they tried steroids on me ....they didnt work ..i starting taking exjade which brings down the iron in your blood because my iron had ballooned to 2200  count when the norm is around 200 or 300...this was caused by all the transfusions...if these blood numbers dont match it is because i am from canada....probably a different system of counting...anyways i started to make my own hemoglobin and it started to move up in count and today i am around 155 which is really very good..i have gone 243 days without a transfusion and my doctor told me that basically my cancer was dormant or they dont know...and that i was the only person in the world who had gotten the better of this cancer on my own ... that was quite a revelation and i sure hope a lot more people start to get the better of this cancer...i am open to questions or concerns about this posting  i hope that sharing ideas might help somebody along the line somewhere and i havent changed my eating or supplemental diet cause i have had too many friends beat one cancer and succumb to another shortly after...i am a 61 soon to be 62 year old male living in victoria british columbia

  • Tatitanzi
    Tatitanzi Member Posts: 1
    #7
    kabillies said:

    hello everybody out there ..i

    hello everybody out there ..i have or had myleofibrosis ...was diagnosed last year in august...needed a blood transfusion right away and then five days  later just before i left the hospital...it wasnt completely diagnosed by then but the blood doctor gave me a heads up and said i think you may have myleofibrosis ...just on the data that was coming back from my bone marrow biopsy....went home after this which was 140 miles away and got my appointments lined up ..started on a regimen of juicing ...kangen or alkaline water ..whole foods ..i had been on a diet of whole foods no processed no sugar..and by that i mean no white sugar...and no diet crap like pops or sauces..basically had my system in not too bad of shape for the fight i was about to start with my cancer...seen my local oncologist and asked about some of my problems with this cancer and basically was told your transfusions were too close together to do much about it...i was getting blood every week and then lengthened that to every two weeks..my record was 21 days without a transfusion...kept up my regimen and added supplements green matcha tea...started eating foods that were conducive to helping hemoglobin be produced...and stayed away from foods that were not conducive to helping my blood count...the one thing that amazed my doctors is that i had no symptoms that the cancer usually produces in its people...went approximately six months going in for transfusions seeing the doctors ..they tried steroids on me ....they didnt work ..i starting taking exjade which brings down the iron in your blood because my iron had ballooned to 2200  count when the norm is around 200 or 300...this was caused by all the transfusions...if these blood numbers dont match it is because i am from canada....probably a different system of counting...anyways i started to make my own hemoglobin and it started to move up in count and today i am around 155 which is really very good..i have gone 243 days without a transfusion and my doctor told me that basically my cancer was dormant or they dont know...and that i was the only person in the world who had gotten the better of this cancer on my own ... that was quite a revelation and i sure hope a lot more people start to get the better of this cancer...i am open to questions or concerns about this posting  i hope that sharing ideas might help somebody along the line somewhere and i havent changed my eating or supplemental diet cause i have had too many friends beat one cancer and succumb to another shortly after...i am a 61 soon to be 62 year old male living in victoria british columbia

    My names is Tatiana from

    My names is Tatiana from California, diagnosed with Myelofibrosis about 8 months ago, life turned completely. I would live to talk to you. I'm 37 years old and my doctors never gave me a FULL diagnose they say I have iron deficiency that's why I'm my blood counts are low. Current in prednisone and is working really well for me. They try Danasol for 2 months and wants successfull, put me back on prednisone and I'm ok now. 

     

    Please contact me tatitanzi@hotmail.com, it's so hard to live with fear every single day, and I want to learn more about your diet, I eat very health but I would love to learn more about it. 

     

    Thank you

     

     

  • kabillies
    kabillies Member Posts: 2
    #8
    Tatitanzi said:

    My names is Tatiana from

    My names is Tatiana from California, diagnosed with Myelofibrosis about 8 months ago, life turned completely. I would live to talk to you. I'm 37 years old and my doctors never gave me a FULL diagnose they say I have iron deficiency that's why I'm my blood counts are low. Current in prednisone and is working really well for me. They try Danasol for 2 months and wants successfull, put me back on prednisone and I'm ok now. 

     

    Please contact me tatitanzi@hotmail.com, it's so hard to live with fear every single day, and I want to learn more about your diet, I eat very health but I would love to learn more about it. 

     

    Thank you

     

     

    myleofibrosis

    hi tatitanzi  going to send you an email hopefully telling you my story will help you

  • lloyd2
    lloyd2 Member Posts: 4
    #9
    kabillies said:

    hello everybody out there ..i

    hello everybody out there ..i have or had myleofibrosis ...was diagnosed last year in august...needed a blood transfusion right away and then five days  later just before i left the hospital...it wasnt completely diagnosed by then but the blood doctor gave me a heads up and said i think you may have myleofibrosis ...just on the data that was coming back from my bone marrow biopsy....went home after this which was 140 miles away and got my appointments lined up ..started on a regimen of juicing ...kangen or alkaline water ..whole foods ..i had been on a diet of whole foods no processed no sugar..and by that i mean no white sugar...and no diet crap like pops or sauces..basically had my system in not too bad of shape for the fight i was about to start with my cancer...seen my local oncologist and asked about some of my problems with this cancer and basically was told your transfusions were too close together to do much about it...i was getting blood every week and then lengthened that to every two weeks..my record was 21 days without a transfusion...kept up my regimen and added supplements green matcha tea...started eating foods that were conducive to helping hemoglobin be produced...and stayed away from foods that were not conducive to helping my blood count...the one thing that amazed my doctors is that i had no symptoms that the cancer usually produces in its people...went approximately six months going in for transfusions seeing the doctors ..they tried steroids on me ....they didnt work ..i starting taking exjade which brings down the iron in your blood because my iron had ballooned to 2200  count when the norm is around 200 or 300...this was caused by all the transfusions...if these blood numbers dont match it is because i am from canada....probably a different system of counting...anyways i started to make my own hemoglobin and it started to move up in count and today i am around 155 which is really very good..i have gone 243 days without a transfusion and my doctor told me that basically my cancer was dormant or they dont know...and that i was the only person in the world who had gotten the better of this cancer on my own ... that was quite a revelation and i sure hope a lot more people start to get the better of this cancer...i am open to questions or concerns about this posting  i hope that sharing ideas might help somebody along the line somewhere and i havent changed my eating or supplemental diet cause i have had too many friends beat one cancer and succumb to another shortly after...i am a 61 soon to be 62 year old male living in victoria british columbia

    mf

    how are you doing now? I have MF and are being treated with Jakafi and transfusions

     

  • lloyd2
    lloyd2 Member Posts: 4
    edited June 2016 #10
    MF

    I was diagnosed last year with myelofibrosis. I am on Jakafi15mg BID and transfusions every 2 months. I was on Pacritinib

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