Haematology Consultant Appointment Wednesday after shocking blood test

This topic contains 2 replies, has 3 voices, and was last updated by  blobgob 9 hours, 47 minutes ago.

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  • #152125

    jackie2026
    Participant

    Hello All
    I had been suffering from a bit of sternum pain on and off when doing certain things.
    I put it down to an old injury when I had carried something very heavy over my chest in 2019.
    Last year I was doing my parents weekly food shopping which aggregated it all again.
    After a while it was hurting when I coughed or sneezed, but I assumed that it would go away.
    I eventually when to the GP in November, January and February before they took me seriously.
    A second Xray showed that I fractured a left rib, which is still causing me problems (plus a lot more pain in my chest area not right at all). Original incorrect diagnosis was chest cartilage inflammation.
    My Serum Kappa Light Chain was 806 giving a ratio of Kappa/Lambda of 115.
    My liver function test was deranged with particularly high ALP 265 and bone profile ALP 262.
    From my googling it seems I would have multiple myeloma with possible extramedullary.
    Quite a shock and the ratio seems severe and extramedullary more complicated.
    Has anyone had similar results and what treatment did you have?
    Many thanks in advance
    Jackie

    #152126

    rabbit
    Participant

    Hi Jackie and welcome to the forum.

    A quick introduction: I was diagnosed with myeloma in 2022, had treatment and have been in remission since 2023. I am NOT a medical professional.

    As your Googling indicated, I think that you have myeloma.

    Your kappa light chains are sky high (suggesting specifically kappa light chain myeloma – the same as me) and your liver function test results are consistent with bone lesions. Your rib fracture is also consistent with that.

    I had even higher kappa light chains (a few thousand!). I don’t remember anything about liver function, but I did have hypercalcaemia (the myeloma leaches calcium from bones into the blood).

    The next step would, I anticipate, be likely to be a biopsy. A sample, typically from the hip bone, would be taken for analysis. Also there could be a scan.

    You asked about treatment. If myeloma is confirmed, typical treatment is often:
    – Daratumumab
    – Velcade (also known as Bortezomib)
    – Thalidomide
    – Dexamethasone.
    However, many new types of chemotherapy have been developed and approved in the last few years, so you may get a variation of this.

    However, the more important message is this: even though this is a huge shock, and right now it probably doesn’t help that you are in limbo until the diagnosis is probably confirmed, you can get through this!

    People live long, long lives with myeloma these days. The treatments can be highly effective (and if one doesn’t work so well then another is likely to work much better).

    Since going into remission, I have been working, going on holidays, exercising and generally enjoying life.

    You are not alone!

    Please feel free to post messages here if you have anything that you want to know.

    Regards
    Rabbit

    #152150

    blobgob
    Participant

    Hi Jackie,

    I too went through the sneeze and break another bone phase for a short while before my Multiple Myeloma was diagnosed in 2021. I was in particular pain when I sneezed as I had a lesion in my sternum which cracked when I did a particularly large sneeze one day! Doctors used to think I was having a heart attack, and I got used to quickly explaining it was just the severe pain caused when I sneezed. I used to dread the next sneeze coming along………

    I had the treatment described above by Rabbit, 5 cycles, after which I was in remission and feeling a lot better, and during this treatment my lesions healed and I was able to sneeze again without pain. I found this treatment not too bad, it was certainly better than the way I felt due to my MM being Stage 4. It all came on so fast, a few months of feeling a bit funny, then going downhill fast after that.

    I then went on to have a Stem Cell Transplant a few months later. The first week after that was awful, but then I started to get better, and here I am now five years on.

    I’m on a daily dose of 10mg Lenalidomide, 21 days on a week off. And twice a day Acyclovir.

    I feel fine most days. I get a couple of tired days each month, so I just adjust what I do round that when it happens. I retired at the same time as my MM diagnosis, so this helps with being flexible.

    So there is definitely hope for you if indeed you do get diagnosed with MM.

    Best wishes,
    Derek

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