The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 60. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Hi Cecelia

     

    Well I hope you stay in remission forever, I am so happy for you.

    Keep up the good work.

     

    Binnie xx

  • 61. Re: Any AML Survivors please post here
    Karen Registered Users
    Currently Being Moderated

    It is so good to read posts from all the survivors!!!! I think many go away from the boards after feeling better, I'm glad some stick around and make us feel good and full of hope!!

  • 62. Re: Any AML Survivors please post here
    LauraB Registered Users
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    I was diagnosed on 05/05/08.  I went into remission after the first induction and my BMB was clear on 06/06/08.  On 10/06/09 I will have been in remission 16 months.  Just taking things one day at a time.

  • 63. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    That is kinda my story too.  I went into remission after the induction and had 4 more rounds of chemo, but I went to the hematologist last week.  He told me I was in remission from the end of induction, so I can count remission from that date.  That puts me 18  months out now. AND DOOING FINE!!!!  WOOOOO HOOOOOOOO

  • 64. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    Cecilia, you're breaking my heart.  You're shaking my confidence daily.

     

    Not really but I've never known a Cecilia I could "sing" that line to.  (You must get sick of it.)

     

    congratulations.  I hope your remission lasts a vvery long lifetime.

     

    Blessings

  • 65. Re: Any AML Survivors please post here
    karen2009 Registered Users
    Currently Being Moderated

    Hooray Laura! hooray Cecelia!! Love to hear you are both doing great and still in remission!!!!!!

  • 66. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    Thanks, yes I hear it some 100 times or so, but each time  doesn't always come with such a good wish for my recovery on the end.  Thanks so much.  I really feel there was so many people out there blessing my treatment and continued recovery I couldn't go wrong.  I appreciate your well wishes.  And you can sing to me anytime.  C

  • 67. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    Thanks for the good energy sent my way.  I appreciate everyone who send positive thoughts with good intentions.  I am soaking up the light.  C

  • 68. Re: Any AML Survivors please post here
    DianeLu Registered Users
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    My son Paul is getting ready to celebrate his 5th Anniversary of his SCT on November 22.  Paul was diagnosed with AML M4 on 8/22/04 and had a matched sibling SCT on 11/22/04.  Paul is now almost 17 years old, a healthy teenager, driving, playing sports and never looks back.  It was a long, hard road, but we reached the other side and wishing that all will follow in Paul's footsteps.

  • 69. Re: Any AML Survivors please post here
    karen2009 Registered Users
    Currently Being Moderated

    That is so good to hear!  What a great picture of the two of you also!  Wishing him a great future!

  • 70. Re: Any AML Survivors please post here
    lioncourt Registered Users
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    I was diagnosed with AML on Nov 4 1992 at age 13. 17 years later I'm still kicking with about 16 years of remission behind me. It's good to see so many people with happy endings.

  • 71. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    So happy for you both Lionscourt and Diane's son Paul!  It is so wonderful that there are survivors posting here and continuing to increase the fight for those still fighting!  It does make me feel better to know that there are those who still have their lives after AML... and if anything my mothers 3 year fight will help someone and possibly lead to knew ideas and cures down the road! Hugs, nicole

  • 72. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Hi. This is my first visit ever to this forum and please excuse any spelling mistakes or grammatical errors. It's not that easy to cry and type at the same time. There are so many brave people and loved ones here that it's twisting my heart in knots.

     

     

     

     

    I'm proud to say that I'm an AML survivor of, well..I'm not sure how to answer that from my bone marrow transplant can be my starting point, and that's now 20 months ago! Time flies(I’dlike to add whilst having fun, but that hasn't been the case). I was diagnosed with AML in October06 and was treated with chemo, then was given the all clear in June 07, relapsed on my birthday (Sept 25), more chemo and then a bone marrow transplant in Feb08. Brilliant! Given the all clear in May08. Diagnosed with chronic GVHDlate summer and diagnosed with BOSin Oct 08. Unfortunately the GVHD had gone to my lungs and led to my body rejecting my lungs as foreign matter. That was bad. Had a double lung transplant earlier this year and am doing amazingly well!!! I can breathe, walk and talk again. I could talk and breathe as soon as I awoke from the lung surgery. Now I'm out running and working out every day. Still have cGVHDwhich plays havoc with mostly my eyes, but believe me, I'm not complaining!!!!! After being diagnosed with BOS, I never thought that I’dl ook back on cGVHD as "the good times"!

     

     

    My sister made me promise not to log on to any forums whilst I was ill and now I understand why, this was/is her favorite site. She followed it slavishly and told me loads of facts and stories that contributed to my recovery. She mentioned that she thought it was a shame that people left the site when they recovered. Something I think everyone on this site can relate to. You don't really want to relive this experience.

     

     

     

    The thing is though that once the body recovers the mind needs some tending loving care as well, as that tends to be largely ignored whilst concentrating on surviving. That's my little trouble at the moment. And I do mean little, but I know that I have to deal with it otherwise it will just fester and grow. I don't feel that I can talk to anyone (except my GP who survived cancer by the skin of his teeth, and he suggested writing as an outlet) I think everyone else sees that I’m happy and healthy and have nothing to complain about (which is 99% true) and god knows that it's been as tough, if not tougher on my family then me, so I can't burden them further. They don't need me whining and having little emotional melt downs at the weirdest things. So I recently started a blog to blow off some steam. It actually helps

     

     

     

     

     

    Thanks for this wonderful, informative site and I’ll definitely visit this again. Stray strong everyone, my thoughts are with you all.

     

     

    Soldol

  • 73. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Sorry, forgot a couple of things there. A lot going on upstairs at the moment

     

    I was 35 when first diagonosed with AML M0/M! and my BMT was an unrealted donor (German If I'm correct). None of my siblings were matches, so thank goodness for the regisitar.

     

    I stil don't have 'normal' hair after the BMT. I was told beforehand that this sometimes happens. It's been more of the kind that a baby is born with. Started out tiny, sparse and basically just a hair here and there. It's getting better with age though (my hair is nearly 2 soon. Tell me about a bad hair day During chemo though it came back in all different colours and shapes and thick as it had always been. But it's only hair, and if you take my actual age and hair age, i guess I'm 19 again. Not bad. After the first induction and chemo i went into early menopause which was a shame as I didn't have any children from before. We allways think there's time. On the huge plus side, I'm blessed with beautiful nieces and nephews that i couldn't love more if they were my own.

     

    As to why God does what he does, I don't think anyone can answer that. I do believe and pray, but when it comes to which i'd go with if i had to choose, it would be modern medicine every time. Miracles happen every day. When a baby is born, what could be more of a miracle then that!? What worked for me was a combination of both. But each to their own.But isn't it written that god helps those that help themselves? Bad things happen to good people and vice versa, i think it would drive us all nuts if we used too much time thinking about the whys and such.

     

    Soldol

  • 74. Re: Any AML Survivors please post here
    mamawarrior Registered Users
    Currently Being Moderated

    Soldol, i am totally amazed and just want to wish you well in your ongoing journey.

     

    While it had crossed my mind, I had not heard of transplant patients having solid organ transplant after a stem cell transplant and was curious about it. We have had some mighty sick folks on the transplant forum, i think of ami and her lung problems,  that i wondered  would they benefit and even  be eligible for transplant. It used to be that solid organ transplants were on antirejection meds such as cyclosporine for life. Is that how it is now??

     

    Again, i wish you the best.

     

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