The Leukemia & Lymphoma Society - Fighting Blood Cancers
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Any AML Survivors please post here

Binnie Registered Users
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Thought I would start a thread about people who have survived the horrible disease AML.  I am sure it can give people hope as it did with me on the other board.

Please feel free to include your sex, age and how long in remission.

Thanks to all. xxxxx

  • 1. Re: Any AML Survivors please post here
    ncook Registered Users
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    Hello!  Yay, Im the first response.. My Mom, Beverly Sue, is a Survivor of not ONLY AML, but also a SCT.  She was diagnosed with AML M1 in July 2006 (1 week after my brother's wedding).  She got into remission easily.  In April 2008 my mom relasped with AML M1.  She had 4 rounds of chemotherapy and was back into remission.  After getting into remission her SCT was put on hold while she dealt with a blood clot in her lung and candida infection on her lungs and liver.  Finally on Aug. 2008 she recieved her SCT at Indiana University Hospital as her sister as her donor.  The first 50 days went well.  She was released from the hospital to the apartment on Day 11, and lived at the apartment for 1 month.  Around Day 70 and Day 110  it was determined that she had GVHD of the GI and gut.  She was put on high doses of steroids.  Around Christmas she was well enough to go to dinner and shopping briefly.  In January she began having weight loss, diarrea, and stomach cramping.  Test were ran through Feb. but no answers except for possibly a little GVHD in her gut, and some ulcers, especially a large one near her colon.  The Dr. could not see her colon due to the bleeding from the stomach lesions.  The lesions were cortorized.  On March 8th mom went in for a routine check up.  At this point she was weak, down to 80's lbs, and very fatiqued, plus diarrea.  A colonoscopy was performed and results were that CMV and GVHD had ruined her colon.  That night at 8pm she went into emergency surgery and had her colon removed.  It was a blessing that she made it through the surgery.  The next 40 days were spent in the hospital.  Reminding you she was on a vent after surgery and in ICU for a week.  She gained 30 lbs of fluids, and a clot was found in her lungs.  She was so thin that her skin on her back and arm broke in different places.  She could not walk nor even lift her leg.  BUT let me tell you she began physical therapy and began gaining a little strength and eating better.  She is now in a rehab facitlity for several weeks.  She now can walk with her walker, pretty good, and is eating much better.  All 30lbs are off of her and she weighs 88lbs.  She also has had the CMV and BK virus for sometime.  WE are hoping tomorrows Dr. visit confirms that these are no longer an issue.  Also she continues to take heparin for a blood clot in her lung.

    I am here to tell YOU to have HOPE!  With Hope, Faith, Family , Friends, Prayers, and the LLS support, Plus Good Dr.s you can get thru this..

    Have I been scared?  Yes 

    Have I at times questioned the odds of my mothers future?  Yes

    My main advice is:  Lean on others for support, trust your Dr.s & if you do not then move onto the next hospital (my mom did this when she relasped and we are so thankful we Did), stay determined, push yourself to keep fighting even when the days seem unbearable and it seems that you wont make it (fight those negative thought),  if your a caretaker take care of yourself (for ex. on a plane you put the mask on yourself first then the other person), find things that help you to relax, talk to people (even when you don't feel like answering the phone or having a visitor know that you need normalcy, ask for depression medication if you believe you are depressed, take advantage of the Social Worker there for you, ASK Questions (if you want to know ask), and remember that you are not Only a cancer patient, but a mom, dad, daughter, brother....

    My Mom, like so many others here, has proved that you can make it!  Yes, the past 3 years have been chaotic, stressful, tearful, and difficult, however, some things we have gained...My mom has the rest of her life.. I would much rather give up 3 years, than give up forever! hugs, nicole

    www.caringbridge.org/visit/welovebev

  • 2. Re: Any AML Survivors please post here
    jmc562 Registered Users
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    As of March 2009, I am a 14 survivor of AML-M2.  I was treated beginning in Jan 95 and went into remission after the induction round of chemotherapy.  I was 39 at the time of diagnosis and am currently 53 year old female living in the metro Washington DC area.  Cheers!

  • 3. Re: Any AML Survivors please post here
    Blossom Registered Users
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    Hi, I was diagnosed with AML M5, normal cytogenetics in May 2007.  I had a SCT with a sibling donor in July the same year.  I had GVHD Grade II for about a year and a half post-transplant.  I am doing well, living in Hawaii with my family.  My health has returned to normal and I am happy to be alive!!

  • 4. Re: Any AML Survivors please post here
    Binnie Registered Users
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    Wow thank you for the contributions. Anymore please?

    I wish you all many, many years in remission and hope it never, ever returns.

     

    Just heard today that my mum has been out driving her car today. it's the first time in 7 months of having AML that she has done this, so good for her.

    Love you mum

     

    Binnie xx

  • 5. Re: Any AML Survivors please post here
    acpj Registered Users
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    My son was dx with AML M5a in 31-October 2005. It past 3,5 years. He done 18 month of chemotherapy and 6 sessions of cranial radiotherapy. So far is ok, and I pray for him and all in this board every day.

     

    blessing

    João Antunes

  • 6. Re: Any AML Survivors please post here
    JL2538 Registered Users
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    I was diagnosed with AML in the summer of 1993.  It's been 16 years!! 

  • 7. Re: Any AML Survivors please post here
    Tex Registered Users
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    acpj wrote:

     

    My son was dx with AML M5a in 31-October 2005.


    I was dx'd on 10/31/03.  There are others who have posted here diagnosed on Halloween.

     

    Is your son not a candidate for transplant?

     

    Blessings

  • 8. Re: Any AML Survivors please post here
    RLW Registered Users
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    My daughter was diagnosed with AML m5 normal cytogenics in Aug 2008.  (aged 19)  She went through 1 round of induction chemo, and 2 rounds of consolidation chemo.  Finished in Nov 08.  We took her to MD Anderson last month to talk about a possible SCT.  All docs concluded that we will wait and see.  If she relapses, then SCT.  She has been doing great, back to college and part time job,  and happy to be growing hair again... hoping that SCT won't be needed.

  • 9. Re: Any AML Survivors please post here
    acpj Registered Users
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    .

    Tex

         As the treatment went ok, and my son enter remission right in first induction and the fact that he was 7k white cells in dx, the best option was to avoid transplant unless he relapse.

     

    RLW

         My son also has  normal cytogenic. Keep the fait. I'm very glad that things go well with your  daughter.

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

    acpj wrote:

     

    the best option was to avoid transplant unless he relapse.


    Of course.  I missed that it had been 3.5 years.  I was focusing on the 18 months of chemo which seemed very long to me.  But if it has brought about a remission of that long, it certainly was the right thing for him.


    Blessings

  • 11. Re: Any AML Survivors please post here
    leahamarie Registered Users
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    My son was diagnosed with AML M5 with complex cytogenetics is May 2002 at the age of 3 .  He had 4 courses of chemo followed by matched sibling bone marrow transplant  He is now 6 years and 7 months post bmt (almost 7 years since dx) and doiing very well.

  • 12. Re: Any AML Survivors please post here
    Paul219 Registered Users
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    I missed this thread when it was originally posted (imagine that!!!)  I was diagnosed with AML M5a in December, 2003 at age 31.  My cytogenetics were t(9;11), which is on the more favorable end of the normal category.  I had 4 rounds of HiDAC consolidation, and just passed 5 years in CR.

  • 13. Re: Any AML Survivors please post here
    AnnalynnMS Registered Users
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    Hi everyone, all of your stories are so inspiring! I was diagnosed this past october (at the age of 23) with AML, inversion 16 and FLT3, I acheived remission after one round of induction, they originally wanted to do a transplant but decided i would be better off with consolidation chemotherapy and maintenance, I am actually about to begin my first round of maintenance therapy on monday!

  • 14. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Thanks to everybody for contributing to this thread. I'm so glad that you are beating this disease and doing well.

    My mum got diagnosed October 2008, and is still in remission thank goodness.

    So I will add her to this list as well.

    She is 67 years old, had one induction and two consolidation rounds of chemo. No transplants

    Long may you are live a happy and healthy life.

     

    Binnie xxxx

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