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Hi, is there anyone out there who has been diagnosed with AML in the 20-30 age?

My only child was recently diagnosed with AML a few months ago but it still seems like yesterday. He was then further diagnosed with the FLT3 mutation. It has been pure **** as I am sure all you special people on this site will fully appreciate. Danny is going through his 4th chaemo in readiness for a transplant in which we hope the date is not further delayed. I saw him raw last night, for as much as he is so strong and has been amazing with dealing with this horrible cruel disease, he is starting to break. I have approached consultants and organisations and so far have been unable to find any other young male going through this.

Answers

  • Hello Susie and welcome to the forum.

    I personally can't help with your son's diagnosis, I had something quite different (MDS).

    If there is someone out there on the Forum who can help I do hope they get in touch.

    In the meantime I wish Danny well with his chemo treatment and hope you have no further transplant delays.

    If Danny is well and feels like getting in touch, he could share his experience with us, it maybe helpful to someone else.

    Peter
  • Hi Susie and welcome.

    I'm sorry to hear of your son's diagnosis but it sounds like he his dealing with it positively and is determined to get well.

    There are people of varying ages on here so hopefully there will be someone of a similar age who has gone through the process and possibly for AML. I guess the chemo and transplant cycle is similar for us all, though age will be a factor in the recovery process, so I hope that Danny has the benefit of youth on his side compared to some of us older transplantees.

    I hope his chemo continues successfully and that the transplant he needs is not far away. As Peter says please encourage him to join and share his thoughts with us if he feels up to it. There will no doubt be members of his age, though not necessarily his diagnosis, and also members that have/had his diagnosis but may be of a differing age, but either way he will hopefully find support here.

    All the best to you both,

    Steve
  • Hi am 28 now was diagnosed in 2013 with AML had chemo and recently had a transplant if there's any thing you need to ask feel free will try and help the best I can
  • Hi iwarne87, thank you for replying as we have found it very difficult to find someone in similar circumstances ie having AML. Did you have the mlt3 mutation at all? did you have so many chaeo cycles, if so how many, and then relapse to be offered a transplant or was that always planned and it took 2 years to get it? was it an unrelated donor? did you have any problems after the transplant? how long was you in hospital for having the transplant treatment? how are you feeling now?
    my son danny has had 4 chaemo cycles now, the forth being a holding one as the consultants thought that without another cycle before transplant treatment it could risk danny relapsing. we were at transplant clinic appointment yesterday and it seems that it will be all happening next month. it's so petrifying, my knees were knocking just having a quick glance at the unit after the appointment, and danny if feeling more scared the nearer it gets but has done so well up to now, apparently his white counts are robust as are in the healthy range from recent 4th cycle
    it's just like danny says it's all or nothing, he wouldn't want to have the threat of relapse hanging over him all the time and all agree the transplant is the only option
    it's just been relentless and traumatic since January and as say practically having a transplant date is v v scary
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