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AML-TP53 - NHS has nothing else to offer

FormerMember
FormerMember
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Surely I can't just give up.

AML TP53 has returned to be resident in my bone marrow.

I was in remission since Jan 2022 and on track for a Stem Cell Transplant but I am now told thats off the cards and nothing else can be done to treat relapsed AML TP53.

Haemotologist and Addenbrooks will look for clinical trials but I'm not to hold my breath.

I can't give up, never, anything you all can suggest please?

  • FormerMember
    FormerMember

    What reason have you been given for not being able to have a sct and which hospital are you under.

  • FormerMember
    FormerMember in reply to FormerMember

    Reason given is that AML TP35 has relapsed and Macmillan Haematologist (QEH Kings Lynn) says there is no other treament to put me back into remission and that SCT (Addenbrookes) can't happen unless in remission.

  • FormerMember
    FormerMember in reply to FormerMember

    Weird, as my son has had a sct and if he relapses can potentially have another one.  Obviously Im in no way a professional.  I rely on the nurses at Anthony Nolan for a lot of information (Rachel who is lead nurse is great support and so knowledgible)  why not try giving her a ring.  Nothing ventured nothing gain as they say.  Also maybe ask if the marsden can be consulted although I am sure they are already doing that with all the world leader centres.  Is it just the chimmerisms that have detected it or is it back in the bone marrow?

  • FormerMember
    FormerMember in reply to FormerMember

    Haematologist says Bone Marrow Biopsy shows it is back in my marrow,

  • FormerMember
    FormerMember in reply to FormerMember

    No more chemo will work? Or targeted therapy

  • FormerMember
    FormerMember in reply to FormerMember

    Nothing offered, 

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