The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 345. Re: Any AML Survivors please post here
    Tex Registered Users
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    I'm fine, Binnie, thanks for asking.

     

    I'm glad your dad and you are doing better.  I forgot you had a brother but I hope he's doing well, too.

     

    You're often on my mind and ever near my heart.

     

    Blessing, Binnie

  • 346. Re: Any AML Survivors please post here
    jonibraun Registered Users
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    I was diagnosed with AML M1 in October 2009.  I had 2 rounds of induction chemo & 4 consolidations.  I have been in remission since June 2010.  I still worry that it will come back and am so relieved after my monthly doctor visits to find out I'm still in remission.  My counts are still really low although my doctor said he is very happy with them.  I'm back to work now.  My friends and family have been extremely supportive thru this ordeal.

     

    Joni

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

    Congratulations, Joni.

  • 348. Re: Any AML Survivors please post here
    dsmost Registered Users
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    Joni:

     

    After my SCT (we used to call it BMT) every time I sneezed, coughed or felt tired, I was sure I was not longer in remission.  17 years later, my WBC remains at ~ 2.  And that is on a good day!

     

    It took me years to get out of the shadow of AML.  Some people use the saying:  "Get over it."  I have come to the realization that I will never get over my AML experience.  The trick is to get by it.  I believe that people never "get over" any major course altering event in their life.  The death of a loved one.  Physical trauma.  Emotional trauma.  And why should one.

     

    All the best,

     

    Doug

  • 349. Re: Any AML Survivors please post here
    WRomero Registered Users
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    Doug thank you for posting that. I was diagnosed with AML in March 2010 and I my last bone marrow in September was great. I just took another blood test today and my white blood cell has dropped and so has my plattelets. They said that sometimes your numbers jump around in the beginning but I am soo stressed and worried about it coming back. Can anyone tell me what they have experienced or what they do to help ease their minds. I have just had a heck of a day and I just need some support. Thank you so miuch!

    Wendy

  • 350. Re: Any AML Survivors please post here
    trvlnfem Registered Users
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    I certainly haven't been in remission as long as Doug, but I was diagnosed 12/24/07 and went through treatment the first 6 months of 2008.  I have been in remission almost 3 years.  I am still anxious on some level every day about the AML, but my blood work is good and I was bumped up to yearly checkups.  That is a positive sign for me.  I am also less conscious of the of the anxiety, the fear of coming out of remission, but the further I go out from treatment the more reassured I am.  The camcer does change your life forever, and living in the memory does not do me any good.  I believe what I focus on gets more powerful and what I deny can dissipate.  I try to affirm health and happiness every day.  "Today I am living in health and wellness.  I thank god for every day for the blessing of recovery".  Wishing you continued health and continued recovery.  Cecelia

  • 351. Re: Any AML Survivors please post here
    oceania1916 Registered Users
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    My mom, Karen was diagnosed with AML in January 2010, we are just coming up to her one year mark on January 14th, 2011. She went through 1 round of induction, 1 week additional chemotherapy in March 2010 (out-patient) and another round of chemotherapy in May 2010 in preparation for her BMT on May 5th, 2010. Her BMT went very well and she was released from MGH - Boston where she's being treated - 3 weeks later. In July 2010 she was found to have fluid around her heart from chemotherapy treatment - 2 weeks ago her Ecko showed her heart function has returned to what it was before the CHF. In September of this year - GVHD manifested in her gut/intestines. She spent 2 1/2 weeks in patient in October - and was put on mega high does of steroids. This has caused her to drop down to 85 lbs. She has very little energy, constantly fatigued, has difficulty walking due to her muscles completely atrophying. Good news, she's down to one dose steroids 2x a day instead of the 4/4 combo. It's been a difficult fall. I've returned home from Western NY to care for her once again. I remain her primary care taker as my brother cannot handle any part of it - and hasn't ever been able to - and I highly doubt he will.

     

    Her counts though overall remain good .. she just this week had 4 hour IV/IG infusion because her numbers were low. Her oncologist does not want her to relapse and go in-patient again. She's in PT 2x a week to begin to rebuild her strength -- yet, it's going to remain slow process for quite some time. Remarkably though, she's working full time as a hospice chaplain. She continues to amaze me. I cannot say enough about her continuing treatment at MGH in Boston. She's received excellent compassionate and resourceful, aggressive yet informed care.

     

    It is not an easy road by any means. She contracted AML from the chemo she received for her Breast Cancer in 2008. There is less than a 2% chance of this occurring and so soon afterwards. As she has a genetic mutation to her chromozone 11 b/c of this - her only long term course of treatment was a BMT from donor.

     

    -- Erin (daughter/caregiver)

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

    I am so sorry to hear about your mother's struggles (and yours by virtue of your loving caregiving).  It sounds like she is a brave and bold woman.  I hope things continue to improve for her and she makes a good solid recovery.  My son lives with me and I am not sure he handled it much better than your brother.  Thank goodness my daughter was about 20 minutes down the road and was able to help me with the transport.  My 70 yo brother drove 250 miles each time I went through chemo to help with giving me the outpt care I needed.  He was a real trouper and stayed till late in the evenings when I had to have 2 x's a day treatments.

     

    I will wish for you and your mom continued strength and perseverance for her big fight.  Blessing to you Cecelia

  • 353. Re: Any AML Survivors please post here
    JBT Registered Users
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    Hello all and happy holidays!  I was dx with aml (11q23 and flt 3) august 10 2009. I went into remission after first round of induction therapy and was told at that time my only option was a sct.  Fortunately my brother was a 10/10 match and I received my transplant October 23 2009 at baylor university medical center in Dallas.  My wife and I had only been married for 1 month when I was dx'd!  She has been an awesome partner and suffice it to say we have just enjoyed a much merrier Christmas this year.  I have some mild gvhd but otherwise have responded great to the transplant.  My best to all.  John Tanner

  • 354. Re: Any AML Survivors please post here
    texgma Registered Users
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    John, I don't know if you remember me, but I was in Baylor duriing that time and had a bone marrow transplant for AML on 5/18.  My husband would bring candy up for the staff to eat.  It's nice to hear from a fellow Baylor person and I'm glad that you're doing well.  I am too - no GVHD that we can tell, although the Dr. is treating some things as if they were GVHD.  Welcome to the boards - Linda Centraccoh

  • 355. Re: Any AML Survivors please post here
    JBT Registered Users
    Currently Being Moderated

    Hi Linda and thanks for the welcome.  I've decided to begin to participate on the boards a bit now that Im over a year out!  So glad to know your doing well.  My best, JT

  • 356. Re: Any AML Survivors please post here
    TamiT Registered Users
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    Doug, you are soo right. I did the same thing at first, but you can't let this disease control your life. No, you

    will never forget what you went through. None of us will, but we can choose to move on with our lives.

    We have to be smart about what we do (get rest, reduce stress in our lives, etc). But life does go on.

    I'm a three year survivor and I still pray before I go to each doctor appt.

     

    Take care and be encouraged. Be blessed.

    Tami T

  • 357. Re: Any AML Survivors please post here
    TamiT Registered Users
    Currently Being Moderated

    Welcome John. Hope all goes well for you and your family. My best to you.

    Tami T

  • 358. Re: Any AML Survivors please post here
    TamiT Registered Users
    Currently Being Moderated

    Erin: You and your mother will be in my prayers. Will also keep your brother in prayer in hopes that he will

    gain the strenght he needs to help you with your mother. I know it can be very taxing on caregivers, but I

    know your mom appreciates everything you do for her.

    Be blessed.

    Tami T

  • 359. Re: Any AML Survivors please post here
    binh514 Registered Users
    Currently Being Moderated
    Hi everyone it's my first time here,
    I'm still a patient, 23yrs vietnamese with AML M4, but hearing from all of you  that survived only with chemo gives me a lot of hope, they told me I got two option : agressive chemo or SCT. The doctor told me that my case was better to go with a SCT but unfortunately I only have a half brother so I have to find a unrelated donor. I got my first consolidation chemo a month ago and I feel great.. it's like i've never been sick! I'm in my 2nd months of remission and hope and pray to stay that way. I'm determined to come back here in a couple years to tell you guys a good news !
    And btw happy new year of the rabbit ! I'm also a rabbit, hope that's my year !

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