AML Relapse - Doctors Given Up

FormerMember
FormerMember
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Hi there

I'm new to this site and wondered if anybody could offer me some advice.  My story is that my boyfriend, who is 37 years old, was diagnosed with AML in Feb last year.  He went through chemo and in May went into remission.  Unfortunately it came back again in September, and after a week of intensive chemo, he underwent a bone marrow transplant in November.

Things were going exceptionally well and he was amazing the doctors with his recovery rates after the BMT.  However, a couple of weeks ago he started feeling unwell and went to the hospital for his routine blood tests, which to our horror showed that the AML had returned scarily soon.

The doctors have told us that there is nothing more that can be done for him now and that they cannot justify giving him any more treatment other than palliative care to help alleviate the symptoms.

We are both utterly devastated by this news and I just cannot believe that they won't even try to fight it, as he is so willing to go through whatever he has to, to beat this.

I guess my question is do we have to go along with what the doctors say or can we demand more treatment?  Would it make a difference if we paid or went to a different hospital?

Has anybody relapsed so soon after BMT and received further treatment and gone into remission?

I'm sorry for all the questions but I'm just desperate to know if there's any chance whatsoever, no matter how small.  We had so many plans for our future and he is just too young to die when he has so much to live for.  It's such a cruel and unfair disease.

Thank you for reading this.

Sarah

  • FormerMember
    FormerMember
    So sorry to hear your devastating news. Just a thought, is there any way you could get a second opinion? Treatments offered vary so much from area to area that it might be worth considering looking a farther from home for a doctor who might be able to help.
  • FormerMember
    FormerMember in reply to FormerMember

    Maybe this is something we should look into.  Up until recently all his treatment was carried out at the Bristol Royal Infirmary, but now that the treatment is palliative, it has been transferred closer to home at Weston Super Mare.  The doctor there asked if he had been offered the chance to take part in any clinical trials but when we said no, he didn't mention anything more.

    I just worry that it will take time to go about finding another doctor to give a second opinion, and that is something we don't have a lot of.  Does anybody know of any specialist doctors who we could contact?

    Thanks for any help that you may be able to offer..

  • FormerMember
    FormerMember in reply to FormerMember

    I know this was over 11 years ago but reading this is exactly what we are going through with my mum at the moment. What was the out come? Did u get any help???