The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 360. Re: Any AML Survivors please post here
    CurlyheadTiffany Registered Users
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    I'm almost to my 5 year anniversary for AML translocation of 8:21.  I was first Diagnosed May 19th, 2006 and had one round induction and four rounds consolidation chemo.   I was fine for a year and then on my One year anniversary I relapsed on May 19th 2007,  Induction Chemo failed for the relapse and I had to have a Bone Marrow Transplant.  I had an unrelated Donor , and got my second chance at life on August 27th, 2007.   I am now 28 years old and disabled. I am a mother of a beautiful daughter/ eight year old.   I stay at home and unable to work because my immune system has not recovered and I have chronic GVHD in my lungs and eye.   I can due normal activities and enjoy life but I have to be careful and rest a lot. 

     

    Tiffany/Ohio

  • 361. Re: Any AML Survivors please post here
    zzzoltan Registered Users
    Currently Being Moderated

    I was diagnosed in May 1991 and have been in remission/survivor ever since.  I certainly would like to find other long term AML survivors to discuss medical issues with.

     

    Zane

  • 362. Re: Any AML Survivors please post here
    gonebeyond Registered Users
    Currently Being Moderated

    Hi ZZZOLTAN,

    I hope you are doing ok tonight.  I am not 15 years out of AML yet.  But I am 13 years out.  I had 2 rounds of 24/7 drip chemo and no bone marrow transplant.  I am doing fine these days.

    And I do work full time.  Though I rarely feel like it.  I do a lot of pretending.  I'm just "GLAD TO BE HERE".

     

    I would like to compare notes with you whenever you want.

    Gonebeyond

  • 363. Re: Any AML Survivors please post here
    Pman Registered Users
    Currently Being Moderated

    If the odds of one sibling matching is 25%.  The odds of at least one of N siblings matching is (1-.75^N). Here is how it goes:

     

    number of siblings                  chance of a match with at least one sibling

    1                                               25%

    2                                               44%

    3                                               58%

    4                                               68%

    5                                               76%

    6                                               82%

    7                                               87%

     

    Sadly, no matter how many brothers and sisters you have, there is never a 100% chance of a match.

  • 364. Re: Any AML Survivors please post here
    niciop Registered Users
    Currently Being Moderated

    Has anyone with AML achieved a "complete molecular remission" as measured by PCR?  One onclogist tells me that I will probably remain in remission with a 0 PCR and another says my only chance of long term remission is with a bone marrow transplant.  I was diagnosed 1 year ago, have had induction and 6 consolidation chemotherapy treatments so far.  I am not sure what to do.  I am a 8;21 translocation AML.  Anyone with a similar experience out there?  I have a matching donor, but I am not young (59 years old) and have had treatment with chemo and radiation for breast cancer.  Has anyone had a "mini transplant"?

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

    Hi Niciop,

     

    I saw this last week but have been busy with school, so sorry for the late response...

     

    One thing I would like to suggest is that you re-post this in the AML and/or transplant forum rather than in this forum, which doesn't get much traffic.  Put something about what you are wanting to know in the title of the thread to attract folks with the sort of experience you're seeking.

     

    Now, to address your questions: I have not had anything other than blood tests (CBC/differential) since the BMB that confirmed remission following induction chemotherapy; my doc feels it's not necessary to do more extensive testing, and I'm not inclined to push for another BMB!  I'm approaching 3 years since the end of treatment and all seems to be well, so I'm ok with his methodology.

     

    From what I understand, the 8:21 translocation actually confers a "better" prognosis; what might be muddy-ing the waters in your particular case is whether or not they are considering this a secondary cancer - that is, brought on by the treatment you received for the breast cancer.  If so, that drops you down a notch into a less favorable prognosis category.  Now, having said all that, I want to add the disclaimer that I am not a doctor.  I am merely a patient who has been sitting on these boards for the past 3 years.  Still - it would be something to ask about, and might be why one doctor is pushing for a transplant.

     

    The advice we usually give when we encounter a patient with two opposing views from two doctors is to seek a third opinion and use that opinion as a tie-breaker of sorts.  In the past, folks have been able to get either the Hutch or MD Anderson to respond via email in order to get such a review of their cases, so you might consider that.

     

    We have had some people on this forum who have had mini-transplants that have been successful.  Again, a new thread with something to that effect in the title on the transplant forum might get you more responses.

     

    Hope you find some of this helpful.  Please let us know how you are doing, and what you decide to do.  If you have more questions, fire away and we'll try to guide you to the answers.

     

    - WBF

  • 366. Re: Any AML Survivors please post here
    JReedA3 Registered Users
    Currently Being Moderated

    Diagnosed 1983 at 3 years old so it will be 29 years in June

  • 367. Re: Any AML Survivors please post here
    powelld316 Registered Users
    Currently Being Moderated

    Hello Binnie,

    It's 2012 and I hope your Mom is still doing fine. I have 3 things I can tell you about surviving luekemia.

    1) Trust your Docs, if you don't find one you can.

    2) Pray and enlist others to pray for you. I have found that prayer is very powerful!

    3) The famous Winston Churchill quote is very applicable... "Never ever give up"!

    I have used those 3 things to live over 40 years with AML. I was 16 years old when I was diagnosed on July,13,1972 in Birmingham Al. I am 56 years old now.This was long before Bone Marrow transplants and all the new drugs they use today.

    I never could remember the date I was diagnosed but I was talking to my sister one day not long ago and she said I know the date you were diagnosed I could never forget that day. It was on my birthday july 13th! I had never realized that.

    I hope your mom lives a healthy life and I hope this gives you some hope that things can turn out for the best.

    David Powell

  • 368. Re: Any AML Survivors please post here
    kathydeang Registered Users
    Currently Being Moderated

    I was diagnosed with AML when I was 44 yrs old.  I had a SCT and have been clear for four years.  Some skin GVHD, but I'll take that all day long.  It is amazing what they can do....good luck to you all!

  • 369. Re: Any AML Survivors please post here
    beatcancer Registered Users
    Currently Being Moderated

    I have 6 brothers and sisters so my chances were 82%!  Turns out that you wind up in the 18% chances sometime.  I did find a MUD that was a perfect match and had my SCT in September of 2011.  Closing in on 2 years!

  • 370. Re: Any AML Survivors please post here
    SarahtOKLA Registered Users
    Currently Being Moderated

    Hi I'm Sarah! I was diagnosed at age 19 in November 2011. I am blessed to say I am in my 16th month of remission. Praying to stay that way. No BMT. Only chemotherapy. Cytaribine, bortezomib(study drug), Etoposide, Daunorubicin. I had 4 rounds of chemotherapy. I am now 21 almost 22 years old and finally strong enough to go back to college to finish nursing school. I had AML M2 also FLT 3 but not very high levels of flt3 gene. I had a favorable and one unfavorable gene. Bortezomib has left me with some nasty chronic leg pain under control through pain management. was overdosed on the bortezomib (poorly handled clinical trial). I pray everyday that others will not be afflicted by this disease. It was the hardest worst thing I have ever undergone. I was lucky enough to have amazing doctors at OU childrens hospital in OKC, OK.

  • 371. Re: Any AML Survivors please post here
    tmomerling Registered Users
    Currently Being Moderated

    Diagnosed with AML June 2006, in remission with chemo only (no BMT) since.

  • 372. Re: Any AML Survivors please post here
    gboyd2 Registered Users
    Currently Being Moderated

    Hi ZZZoltan.

    I was diagnosed in 1986 when I was 39 years old and am now, at age 66, a 27 year and three week survivor. I had Ac-D-Amsa induction which put me in remission then had a consolidation round of Ac-D-Ac at higher doses. Bone marrow transplants were still somewhat experimental in 1986. I have had cardiac issues from 17 years out, had a pacemaker implanted in 2004.. I have developed an abdominal aortic aneurysm and an enlarged aortic root over time-not clear when they began to occur since they are not symptomatic and are typically only found accidentally. I have had retinal detachments, cataracts, and an assortment of autoimmune syndromes but I am still up and running;retired as an attorney but still working as the operating room pharmacist at Johns Hopkins Hospital. Geoff

  • 373. Re: Any AML Survivors please post here
    paul_rheaume Registered Users
    Currently Being Moderated

    I was diagnosed with AML in January 2011 at the age of 55 and received a BMT in July 2011. I am cancer free and doing very well, now see my doctors only every 6 months. My wife an I are now both retired and enjoying life. Have had a small skin cancer on the forehead that was surgically removed in 2013, no problem, but I must protect myself from the sun more carefully.

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