The Leukemia & Lymphoma Society - Fighting Blood Cancers
6 Replies Latest reply: Jul 9, 2012 1:18 PM by Tex RSS

24 months post auto-sct for AML NPM1+ Flt3- doing just fine!

warrior Registered Users
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Kathy just came home from her 6 month appointment which is also 2 years post auto-sct for AML normal karyotype  NPm1+ Flt3- with a "clean" bill of health. Her doctor was very happy with her counts, her vitals and her health. For anyone beginning this journey I just want to let you know that there can be a positive outcome. Her doc claims that he will never declare her "cured" but the longer out the better the odds that there will not be a relapse.  This is a journey that changes both  patient and caregiver. The first 5-6 months were very hard, Kathy was a very sick patient and her journey through treatment was challenging with trips to the ICU, rashes, fevers, and  a very slow recovery of her counts post induction. Thanks to all on this board for just being there.

  • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
    Tex Registered Users
    Currently Being Moderated

    Really, it's been two years?  Time flies when you're in good company, I guess.  It just doesn't seem you've been around that long.  Maybe a year, but two?

     

    Congratulations to you both!

     

    Screw whether the doc calls her cured.  There's a disagreement, I understand, between docs who think AML can be cured or not.  My dx'ing onc used the word "cure" and I feel comfortable with that.  After eight years, wtf do you call yourself...in super long remission?  I don't even think about relapse.  (KNOCK WOOD!)

     

    Whatever you call it, the likelihood of relapse after 30 months is miniscule.*  It happens, but not often.  Ya'll are almost there and, really, the figures are really good after 24 months.  And this is really great for an auto result.

     

    Thanks for sharing this and give Kathy a hug for me.

     

    Blessings

     

    ------------

    *I only know that the 30 month line is good for allos but I figure its the same for autos.

    • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
      warrior Registered Users
      Currently Being Moderated

      Tex

      time flies whether you are having fun or not....the way I look at it Kathy is cancer free until the day she is not...we just started making plans for longer than 6 months.... but really today is what all of us have and I have no plans on wasting it cheers

      • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
        Tex Registered Users
        Currently Being Moderated

        warrior wrote:

         

        time flies whether you are having fun or not.

         

        It always seems to crawl when I'm miserable, though. 

         

        You're right.  Today I don't have cancer.  Hell, all guys have prostate cancer waiting for us if something else doesn't get us first.  So, how else would one approach things?

         

        I do understand the whole six months planning thing.  I was unable to think a month ahead for a long time.

         

        it does get better, doesn't it?

  • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
    KyGuy Registered Users
    Currently Being Moderated

    It's great to hear those results after an auto for AML.  They're making strides in treatment!  I'm glad to hear she's doing so well.  Congratulations!

     

    Take care,

    Kelly

    • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
      warrior Registered Users
      Currently Being Moderated

      Kelly

      the thought is if one has a mutation that has a pretty good prognosis, the auto-sct lets them really blast the patient with chemo and then restore function with the patient's own stem cells. kathy is on a study and I believe Dan who had the same mutation was on the same study.... Are you moving or staying?

      • Re: 24 months post auto-sct for AML NPM1+ Flt3- doing just fine!
        KyGuy Registered Users
        Currently Being Moderated

        warrior wrote:

         

        Kelly

        Are you moving or staying?

        I need a crystal ball.  I have 2 companies that haven't replied to me yet.  I talked to one on Friday and they haven't made a decision yet.  If those 2 don't work out, I'll be moving.  The people here know that my goal is to stay and they understand. At the same time, they want an answer.  I'm supposed to be there in August but could push it until Sept.  We'll see.......

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