The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 330. Re: Any AML Survivors please post here
    Tex Registered Users
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    What a story.  Twenty-three plus years?  That's a lot of reason to hope.

     

    I had cytabarine and one of the rubicins...I think it was dauna.  I was unaware there were "expected" cardiac issues.  They must have done something to improve the meds, though that usually changes the name.  Maybe they've found other things to ameliorate those issues.  I mean, they do have potential issues, they just don't expect them these days.

     

    Anyway, thanks for chiming in.  As hard as our journies through AML were, I can't imagine how difficult it was back in the 80s.  Hats off to you.

     

    Blessings

  • 331. Re: Any AML Survivors please post here
    mtbikernate Registered Users
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    29 now, 28 at dx.

     

    AML/M2 translocation 8/21

    1yr remission

    FLAG protocol (fludarabine, cytarabine, mylotarg)

     

    I was in the middle of a master's degree program in wildlife biology when this hit.  I have since resumed.  Cancer set me back about a year, but I'm fighting this tooth & nail.

  • 332. Re: Any AML Survivors please post here
    angelajh Registered Users
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    I have been reading up on the late effects of treatment in long term survivors. I have been in remission for 22 years (AML M2) and went into remission with chemotherapy only. I thought that the possible late effects was just associated with high dose radiation but apparently there are late effects with chemo as well. I have been suffering with chronic fatigue for the last 2 years. I was just recently diagnosed with Hypothyroidism and some female hormone problems. My Dr. seems to think this was all related to the late effects of the chemo. I will be having some more tests next week such as adrenal gland issues. I know one of the main chemo drugs that was used with me was Cytarbine and I did have it injected into the spine. I think some of these late effects don't surface for decades later. I guess it's a small price to pay to be cancer free.

  • 333. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    I read your story (or the first installment, it seems) and well, what a ride you've had.  So glad to hear you're doing well now.  This stuff can really shake up a person's life, but it sounds like you're back on track now.  Wishing you a long and lasting remission.

     

    - WBF

  • 334. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Angela,

     

    Just wanted to offer my congratulations for making it 22 years - that's amazing.  How old were you at diagnosis?  I hope you get the current issues sorted out and get some energy back soon.

     

    - WBF

  • 335. Re: Any AML Survivors please post here
    mtbikernate Registered Users
    Currently Being Moderated

    I've finished off my story, by the way.  Thanks, I am mostly on-track.  Won't be totally until I am finished with the Vidaza, I think, but my doctor wants me on that stuff from time to time for roughly the next year.

  • 336. Re: Any AML Survivors please post here
    annekmartin Registered Users
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    First time I've ever participated in one of these. So, here goes.

    I was diagnosed with AML on Memorial Weekend, May of 1990. Twenty years ago. Some memory. I was 32. I had two daughters ages 3 and 5.

     

    It was a good 2-1/2 years of remission, induction, autologus bone marrow transplant and all the complications I could handle. But, I came home from

    my ABMT and never looked back. I stopped going for check-ups at Johns Hopkins after five years and last saw my oncologist 10 years ago. I started a business that I could operate from my home freeing me to participate in all the blessings of being a mother, wife, friend.

     

    I have been reading all the messages that others have left and I am so inspired. All brave. All heartfelt.

     

    I guess my message here is nothing new. Life is precious and unpredictable. I hope this might let others know this disease can be beaten!

     

    Good luck to you all.

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

    annekmartin wrote:

     

    I guess my message here is nothing new. Life is precious and unpredictable. I hope this might let others know this disease can be beaten!

    Not original.  But something we need to be reminded of from time to time.  I think it had been long enough. so thanks for the reminder.

  • 338. Re: Any AML Survivors please post here
    Jamzeesmom Registered Users
    Currently Being Moderated

    I'm sending you some good wishes for continued remission.  My son just got done with treatment.  He had 2 induction rounds, achieved complete remission, had 3 consolidation rounds and finished up with a NK cell infusion.  They have decided more and more to take the "wait and see' attitude with intermediate risk AML now before going to transplant.  We are in the same boat, you and I, waiting and hoping for the best. My son even has a matched sibling.

     

    My son's CB site is http://www.caringbridge.org/visit/jamesbuchanan

    I would love for you to visit and leave your daughters link if you all have one.

     

    Good Luck and Blessings,

    T

  • 339. Re: Any AML Survivors please post here
    TMW Registered Users
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    10/7/10:  I'm 60 & was diagnosed w/APL in May'09.  Couldn't do ATRA-had a very violent reaction to it. I've been doing Arsenic Trioxide chemo drip treatments on MWFs, for 30 dayz, then I'm 'off-chemo' for 30 consecutive dayz.

    Wanna share your age?  Did u do ATRA or Arsenic Trioxide or both or neither or something else entirely?  How long was your 'maintenance therapy'? This past Sept 9, 2010, I was told by the oncologist that there is 'No Evidence of Disease' (NED)/  Translation:  There no APL cancer cells in my body that can be seen.  But, I've been told that I have to continue the AT 'indefinitely' to treat microscopic bits of APL cells that cannot be seen with the naked eye in blood tests.  The doc said there are several stages of Remission.  Also, in 2005, I had 4 rounds of chemo for breast cancer; had 2 lumpectomies, & am still taking a breast cancer drug for that.

    Thanx.

  • 340. Re: Any AML Survivors please post here
    PeachyQueen Registered Users
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    Hi TMW!  I was diagnosed with APL in 4/06.  I had a nasty reaction to ATRA as well - multi-system organ failure on the first round, a nasty full body rash the second, and nansy migraines ther rest of the time.  The docs determined that the migraines were caused by a swelling around the brain, and they gave me some sort of dieuretic (sp) to begin 3 days before I began the ATRA..  When I had the ATRA reactions, they would stop the drug and then restart it.  Each time, my reaction was better.

     

    My therapy followed a Johns Hopkins protocol.  It's been a few years, so my memory is a pretty rusty.  For induction, I had ATRA for 30 days (I think) and daunorubicin.  For Consolidation, I had 72 hours of an ARA-C drip, 3 rounds of daunorubicin, and six weeks of arsenic trioxide. Consolidation was 2 years of ATRA for 15 days every 3 months; methotrexate weekly, and 6MP daily.  October 1 marked the second anniversary of the end of maintenance therapy, and in April, I am considered cancer free.

     

    Good luck with your treatment!

     

    Diane

  • 341. Re: Any AML Survivors please post here
    jeffsgirl Registered Users
    Currently Being Moderated

    Wow Tex!  I was reading over this discussion and read this post of yours. You put into wonderful words exactly how I feel.  God is wonderful and loving, but I don't think he micro-manages us down on earth. I think that sometimes bad things happen and sometimes good things happen. Through it all, God is here....and He loves us.

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

    Thanks, JG.  It's always nice to know someone agrees with me.  And, I think you got it right.

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

    Binnie,

     

    I don't know if you still read this thread or anything here.  I just want to extend my good wishes to you and your dad.  I hope this Season is a little more tolerable for you both.

     

    Blessings

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

    Hello Tex,

    That is so kind of you to think of me and my dad. We have been out for lunch today and had a jolly good time.

    He has asked if me and my husband would like to join him and my brother for Christmas dinner this year as I looked after him last year.

    But I would do it again and I told him so. We shall see what happens. I told him if we come then I would like to see the Christmas tree up as mum used to love seeing that.

    We both love to talk about mum, sometimes through tears, and sometimes through laughter. She is in our thoughts everyday.

     

    How are you Tex, are you well?

     

    Best wishes

     

    Belinda

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