Diagnosed with smouldering myeloma

This topic contains 1 reply, has 2 voices, and was last updated by  kh0305 1 year, 7 months ago.

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  • 20th April 2023 at 11:14 pm #147854

    loopykat
    Participant

    I got my diagnosis yesterday of smouldering myeloma, I’m really not sure how I feel at the moment. I really thought it would be MGUS as my bloods are so good and as it turns out my CT scan showed no bone damage. My igA kappa numbers are 13 though and my consultant said anything over 10 is considered myeloma. Fingers crossed is stays smouldering for a long time to come. Wasn’t easy telling my mum or my children. Any advice or thoughts welcome.

    26th April 2023 at 11:09 am #147875

    kh0305
    Moderator

    Hi loopykat,
    Sorry to read of your diagnosis. It is hard to process but I’m pleased to see that there is no bone damage and the kappa numbers are still pretty low. I hope that it stays smouldering for many many years for you. Just stay aware of any changes and don’t be afraid to flag them with your medical team. When my dad’s MM relapsed it was him feeling bone pain returning rather than bloods (as his frequency of tests had reduced) that alerted us and he flagged it and they confirmed it with the bloods.
    Wishing you all the best xx

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