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AML with CBFB and relapse

Jocamper Total Reaction Points: 0
So we were told that it was unlikely (3%) chance that the AMl would return and 12 months later it has so questions
- does having this rare chromosome carry any advantage now?
- if it is rare then I guess getting a match for an SCT is going to be tough?

Anyone had any experience ?

Jo

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Jo,

    I'm afraid I don't have any experience of this particular condition, but I would have thought in terms of finding a match the chromosome might not be a factor as there will be other tags that the match will look for so it shouldn't be any more difficult than finding a match for those without it.

    Hopefully someone else or one of the Anthony Nolan team will be able to offer some advice and confirm my theory about the matching process.

    I assume that your treatment so far has just been chemo without a SCT and that transplant is now the route you are progressing along?

    Kind regards,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Jo

    I am the nurse specialist in the Anthony Nolan patient services team, I am sorry that your AML has relapsed and you are now needing more treatment. Although we know some types of AML are less likely to reoccur including those with the cytogenetic abnormalities like CBFB, this unfortunately is not a guarantee. Its not a disadvantage once you relapse but having relapsed usually means that you will now need a stem cell transplant as part of your treatment.

    A stem cell transplant will be from a donor that is either a sibling or unrelated. Matching you to a donor is done through a blood sample to test your tissue type and this has nothing to do with the cytogenetics of your disease and will not affect your chance of finding a donor. Matching is based on your human leucocyte antigen (HLA) and this needs to be matched with someone who has the same HLA. This is a good link to our webpage that explains how we match and find donors which you might find useful. https://www.anthonynolan.org/patients-and-families/stem-cell-or-bone-marrow-transplant/finding-donor-your-stem-cell-or-bone
    Without knowing what stage you are at with treatment, I wouldn't want to overload you with too much information. I would recommend having a look at our patient information page, especially the little guide for transplant patients and The Seven Steps which are great at informing and preparing you for a transplant. This can be found here https://www.anthonynolan.org/patients-and-families/order-or-download-publications

    Please keep us informed of your progress and I am happy to answer any questions that you might have.

    Best wishes
    Hayley


  • Jocamper Total Reaction Points: 0
    Hi Hayley

    Just to let you know my partner who has thebAML had her SCT yesterday thanks to Anthony Nolan we are so so grateful.

    We know that now comes the hard part.
    But we are as easy as we can be .
    Jo
  • Jocamper Total Reaction Points: 0
    Sorry Hayley
    Does having CBFL help post SCT in terms of a potential relapse? I have read various things that suggest so but I realise that it is down to how aggressive the canacer cells are and whether or not with the chemo and SCT it has been possible to remove all of the cancer cells and keep them
    At bay
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