AML M5

MichelleJohns0574
MichelleJohns0574 Member Posts: 3
in Leukemia #1

2013-04-07

Hello to all! My name is Michelle and my husband was told back in January that he had AML.  As you can imagine it was a shock to us.  He had induction chemo and just finished his second round of consolidation treatment.  He is in complete remission just after the induction chemo.  They are suggesting a stem cell transplant because he has a 50/50 chance of his AML coming back.  We are unable to decide at this point what to do but are seeking a second opinion at Northwestern Hospital in Chicago.  He is currently at Rush Hospital but we can’t seem to get his doctor and the stem cell team on the same page as to whether or not he should have the transplant done.  I am hoping that someone can give me some insight on this issue.  In the research that I have done, I only find negative things regarding his condition.  He as an extra copy of chromosome 4 (trisomy 4) and has tested positive for flt3 ITD.  I just need to hear that he has a chance.  I am unable to focus on anything at this point for fear that I will lose my BFF, husband, my everything!  Please feel free to post your experience.  Thank you!

Comments

  • louzac
    louzac Member Posts: 6
    #2
    AML M5

    Sorry to hear of your husband's diagnosis.  I was diagnosed with AML M1, also with the flt3 marker, back in late July 2012.  I had a difficult time with induction but they finally did get me into remission.  I had one round of consolidation chemo, basically to bridge me to a BMT.  BMT was December 21 after a slightly reduced conditioning regimen.  Routiine checkup today showed good numbers. Tapering off immunosuppressant drugs and considering going on Sorefanib to suppress the flt3 mutation.  I was fortunate my sister was a full match for my BMT.  No significant GVHD so far and I'm at 116 days post transplant.  I am in North Shore Hospital on Long Island and the doctors there as well as the doctors at Sloan Kettering where I got a second opinion recommended the BMT in first remission because of the flt3.  My research indicates the BMT gives you a better chance at defeating the pesky flt3 mutation.  For me it's so far so good, but I'm angry, scared, embarrassed and hopeful all at the same time.  They give a 5 year window after which they declare you "cured".  Even if I'm fortunate enough to survive this terrible disease I don't know if I can take 5 years of this mental anguish.

  • anne22
    anne22 Member Posts: 1
    #3
    Second opinion Northwestern Chicago

    I had a matched sibling stem cell transplant for AML at Northwestern in Chicago in 2007. I had a chromosone abnormality but cannot remember exactly what it was named. I am doing well except for chronic graft v. host disease affecting my eyes, oral cavity, and lungs. I am interested in knowing what happened after your second opinion at Northwestern. My hematologist/oncologist at Northwestern IS the doctor for stem cell transplant. There is no separation between him as the doctor and the stem cell team as you suggested was happening at Rush. How is your husband doing now?

  • mywifesurvivedbmt
    mywifesurvivedbmt Member Posts: 2
    #4
    bmt

    hello, let me say he has more than a chance. It can be beat.during chemo is the worst time we were scared and unsure what to expect. i can tell u this stay germ free both of you. he has a bathroom and he should be the only one using it. double flushing. the first hospital where she had 3 rds of chemo were bad because all u hear are the bad things that can happen. when we went to dallas for her 4th rd and a bmt all u hear are good things. to put it plainly first nurses talk about death the better hospital talk about life. we fought it and won and so can you two. if you have questions and if i can help you write me. tumblebug71071@yahoo.com . I have been where u are and i know its a sometimes a lonley place

     

    best wishes

    larry allen

  • mywifesurvivedbmt
    mywifesurvivedbmt Member Posts: 2
    #5
    oh and there is a good chance

    oh and there is a good chance it will com back stronger and worse than the first time, and they could have a harder time getting him in remmission. those drugs that were used may not work next time. you have it stopped now you must destroy it. its a fight for life you can attack it or wait for it to attack. Its a battle. im sorry to say this and i mean it with my heart but you must decide who will lead the battle you are the luekemia. thats the truth that u must hear. fight it with everything you can. dont ever give up and be strong

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