The Leukemia & Lymphoma Society - Fighting Blood Cancers
9 Replies Latest reply: Jan 3, 2011 2:28 PM by annemadden RSS

Anyone with AML who is 5 years post treatment?

jeffsgirl Registered Users
Currently Being Moderated

I have a very dear friend who was recently diagnosed with leukemia (AML).  She is having a very difficult time looking toward the future without horrible fear.  She went into this journey with way too much knowledge of what she would be facing. She walked with me through my husband's battle with AML.  She also kept up with the battles of others we met in the hospital during my husband's treatment.  There were 5 pretty young people with AML at the same fairly small hospital being treated for AML at the same time.  Out of the 5, 3 of them passed away within two weeks of each other (including my husband) in May of this year.  Out of the two who have survived, one of them relapsed in August....10 months post transplant. She had her second transplant in October and is doing well. The 5th person is doing well, but battling some GVHD.  My friend who was recently diagnosed knows of all these outcomes because she was watching their battles through me.  I KNOW there are people who survive AML.  Since my experience is so fresh, the few patients I know who have survived are just a year or so past transplant and their health is not anywhere near being fully restored. I need to show her examples of people who have reached the 5 year mark and are doing well.  She is also interested in knowing whether anyone has reached the 5 years survival mark with chemo only as treatment (no transplant).

 

Her induction chemo put her in remission. She just found out this week that she has leukemia in her central nervous system, so she is now receiving chemo in her spinal cord.  She was due to start the first consolidation chemo tomorrow, but they have delayed it due to the spinal chemo.

 

Anyone who could share some positive outcomes.....especially long term ones.....I would very much appreciate it.  She needs major encouragement. She has 3 smalls kids....the baby was only 10 weeks old when she got diagnosed.  She is having a very hard time being away from the kids and having a harder time thinking about not surviving this nasty disease.  POSITIVE STORIES NEEDED......

 

Thank you!

  • Re: Anyone with AML who is 5 years post treatment?
    jamielynn Registered Users
    Currently Being Moderated

    Well, my partner is fighting ALL but she is being treated at MD Anderson and while we were waiting last visit, we heard two couples, one older, one middle aged, talking and they were both fighting AML. The older woman was from Louisiana and had been dx 16 years ago. The hospital in her home town gave her 2 years to live, thats when they came to MD. 16 years later she is here and looks healthier then me at the moment and I am 25 LOL. Her story was very inspiring to overhear. And I believe she was there for her check up...definitely not in treatment. There is always hope, and progress is always being made. The way I am keeping my head is you are not a "statistic" until you have either survived...or not. So all you can do is take it one step at a time and give it your all! The best to your friend.

  • Re: Anyone with AML who is 5 years post treatment?
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Jeffsgirl,

     

    There is a thread right now on the AML forum with two posters who meet the criteria you are looking for - one is 12 years out if I'm remembering correctly, and the other is 5 years out - chemo only.  Here's a link:  http://community.lls.org/thread/8076

     

    I hope reading their stories gives your friend something to feel hopeful about.  When a person's in the midst of the battle and having seen others not make it - well, that's pretty sobering.  You might try sharing the "staying determined" strategy with her - staying determined to beat it, to make it wish it would've picked on someone easier to take down.  Lots of us prefer that line of reasoning as opposed to the "staying positive" mantra so prevalent today.  I personally found it much more do-able - there were lots of days I just couldn't come up with "positive", but I almost always could be "determined".

     

    We have had folks here who had the AML show up in the CNS too, and many of them have made it out the other side.

     

    I see you found the other "survivor" thread, and there are some good stories on there as well.  I do think it takes a long time to be able to have the confidence that there's going to be a future to plan for - heck, for awhile I even refused to buy clothes.  It gets better over time.  For now, it's all about hunkering down and getting through treatment - whatever it takes to eradicate the beast.

     

    Bless you for channeling your grief into something productive by supporting your friend.  I can't imagine how many tough memories all this must conjure up for you, but I think it's very commendable.  I wish the best for you both.

     

    - WBF

     

     

  • Re: Anyone with AML who is 5 years post treatment?
    robertkbrown Registered Users
    Currently Being Moderated

    Hi. I'd be happy to share my story -- the quickest version (maybe) is that I'm 41 years old, two daughters (13 and 10), and 20 years and change removed from my last round of chemo. I was diagnosed with AML (M3) in 1990, predating some of the current treatments for that particular subtype. I did not have a BMT. Fortunately, I've had no lasting side effects from the chemo, other than a compulsion to run marathons with Team in Training every now and then.

     

    It is a tough, tough road. No doubt about it. And those first few years, certainly, are marked by fear and uncertainty. But, yes, it is most definitely possible to get to five years (and beyond) with "only" chemo.

     

    Please feel free to pass along my contact info to your friend -- my e-mail address is robertkbrown at gmail dot com -- in case she'd like to talk more, or just vent, or whatever.

     

    - Robert

  • Re: Anyone with AML who is 5 years post treatment?
    Tex Registered Users
    Currently Being Moderated

    I was dx'd with AML m1 on 10/31/2003.  I did have to go through an allo SCT but, to me, that counts.

     

    Hope more than seven years is long enough.

    • Re: Anyone with AML who is 5 years post treatment?
      Tex Registered Users
      Currently Being Moderated

      Oh.  Hell.

       

      Didn't realize I was following Robert.  Guess seven years doesn't seem like much now.

      • Re: Anyone with AML who is 5 years post treatment?
        gonebeyond Registered Users
        Currently Being Moderated

        Hi jeffsgirl,

        I am 12 year and 6 mths out from the AML diagnosis I received at  42 years old.  I remember wanting to talk to someone else who had survived AML for longer than 5 years when i was suffering.  The first 6 months was awful.  But today i am doing great!  I was down for 6 months.  But on the 7th month I returned to work and have been working full time since.I still go for testing once a year, but so far so good!

        The first thing I had for treatment was a pill called vesinoid.  A souped up retinA. After 3 months I had my first round of chemo.  the 24 hour dripfor about a week.  Then a 6 week rest and another 24 drip of chemo foranother week.

        I really thought I would die.  I did not know a body could get so sick or so weak and live through it.  Our bo dies  areamazing.

        So yes, chemo and no transplant and I am alive 12 years and 6 months later to tell about it.

        I would love to tell you or her more if you want.  I love life!

  • Re: Anyone with AML who is 5 years post treatment?
    Bluemoon Registered Users
    Currently Being Moderated

    Jeffsgirl

     

    I pass the 5 year mark in Aug of 2010, I was dx w/AML-M3 at the age of 45 and was treated with chemo and ATRA. After 3 rounds and ~ 8 months of maintenance, the daily drugs and blood transfusion had come to an end. To celebrate my milestone I finished my 1st Olympic distance triathlon with the society’s Team n Training. It takes time to get pass the constant fear of leukemia, but endurance training me help a lot. I gain my confidence by running 13 miles and telling myself I must be sick. Never would finish a marathon or a triathlon if I haven’t had cancer.

     

    Best Wishes

    Carl

  • Re: Anyone with AML who is 5 years post treatment?
    softail Registered Users
    Currently Being Moderated

    I, like Tex (Happy New Year Tex), had AML M1.  Diagnosed on April 23, 2004.  I had Induction and four rounds of consolidation.  Went back to work Jan or Feb of 2005.  Its very scary and hard to not think about, but I'm here to tell my tale.  I wish you and your friend health for the coming New Year.

  • Re: Anyone with AML who is 5 years post treatment?
    annemadden Registered Users
    Currently Being Moderated

    We are not at the five year mark yet, but I know any stories at this stage are good stories.  My husband was diagnosed with AML four years ago this February when he was 36 years old.  After a rough ride with two inductions and four consolidations, and, of course the obligatory trip to the ICU, he is thankfully still in remission.  We considered transplant, but ultimately decided to try "just" chemo first.  Nowadays, my husband is doing very well.  He is back to work and has plenty of energy.  He needs it - we have had two children in the last two years!!  We are extremely grateful for all of the blessings we have had.  We are also so thankful for the discussion boards - there were so many days when we just needed some sort of lift or reassurance and we were always able to find it here.  I hope you can find comfort and strength here when you need it.  Best of luck to you and your friend.

More Like This

  • Retrieving data ...