Confused newcomer

This topic contains 3 replies, has 4 voices, and was last updated by  Jet 12 years ago.

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  • #93849

    ColinG
    Participant

    Hi,
    I was diagnosed about 6 months ago and have since been through regular blood, and urine tests as well as a bone marrow biopsy. My most recent blood test (6 weeks since the last test) showed a huge jump in the Bence Jones protein count(about 300%)but the Kappa light count has dropped by almost 40%.
    What does such a change mean – does anybody know?
    Hoping someone can clarify:-S
    Colin

    #93850

    Gill
    Participant

    Hi Colin

    I have no idea what the phrases mean but I do know that when Stephen (husband) asked the nursing staff to explain they did.

    Stephen made it quite clear from the start that he wanted to know everything. He was a great deal braver than me

    God luck and good health Gill x

    #93851

    BADGER
    Participant

    hi Colin

    not sure what all that maens why dont you give Ellen a ring she is very good and may be able to explain it to you the doctors dont always do that I think they should
    Regards Jo x

    #93852

    Jet
    Participant

    Hi Colin

    I understand the confusion. In the first stages, everything's confusing as it's all so new.

    Briefly, myeloma is either heavy chain or light chain. If they're talking Bence Jones and kappa/lambda values, then you have light chain. The treatment's the same, but the tests to check on response and progression of the disease are slightly different.

    As Gill says above, the best people to ask are your consultant or specialist nurse. I'd say that for any personal medical questions.

    Having said that, a huge jump in your light chain numbers is not a good sign, particularly if the ratio between the kappa and lambda values increases. I wrote about my own test results last year here, which may help you understand a bit better: http://jetblackliving.wordpress.com/2011/04/20/good-results/, which includes a link to a booklet that Myeloma UK publish: http://www.myeloma.org.uk/files/4213/4331/5775/Myeloma_UK_Serum_Free_Light_Chain_Infoguide_July_2012.pdf

    And a slightly more technical/clarifying update: http://jetblackliving.wordpress.com/2011/04/21/further-clarity-for-the-geeks-out-there/

    It's not an easy journey, but it is very interesting and in some ways quite inspiring and liberating, at the times when you're not feeling like s**t.

    I wish you well.
    Good luck!

    Jet

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