Four years relapsing and still no treatment

This topic contains 3 replies, has 3 voices, and was last updated by  tony 11 years, 7 months ago.

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  • 22nd April 2013 at 11:44 am #95084

    tony
    Participant

    Hi my myeloma journey so far,

    Diagnosed December 2004 with Light chain myeloma following unrelated urine test in September 2004. Asymtomatic with kidney function deteriating. (creatinine 180 and rising)Age 53.

    Started CTD straight away and had SCT (Barts) June 2005. 8 million stem cells collected but unfortunately none saved. No problems with treatment. Worked througout except for 2 months for SCT. Complete remission December 2005. (creatinine 130 and steady)

    October 2008 Kappa light chains started rising outside normal range.

    April 2009 offical relapse recorded.

    November 2010 Kappa light chains reached 800 and signed up for Myeloma X (2nd Sct trial). 3 days before treatment to start had a phone call from consultant suggesting we wait until after christmas to start treatment as bone marrow results better than expected. (creatinine 130 and steady)

    July 2012 Kappa light chains 2100.(creatinine 130 and steady)Getting a bit worried now.

    April 2013 Still no treatment required. Kappa light chains a steady fall to 1033. (creatinine gradual fall to 109). My neutrophils were 2.5, 2.0, 1.5 over 3 previous tests. Getting worried again. April result 3.2. Phew!

    I keep telling myself 'don't worry about the numbers' but its hard not to. Still working full time (57 hours per week).

    Good luck to you all on your journey.

    Tony

    22nd April 2013 at 6:16 pm #95085

    Helen
    Participant

    Dear Tony
    How encouraging a post, delighted to hear from you, and yes the number worry is awful. But you give me great hope.
    Love Helen

    22nd April 2013 at 10:38 pm #95086

    mhnevill
    Participant

    Hi Tony

    I agree with Helen, your post was very encouraging. Has your MM had any bone involvement.
    Yes, I know how we all worry about the numbers. I find it hard to get results too which is frustrating.

    Very best wishes. Don't work your life away, but may your non treatment phase last for years.

    Mavis

    23rd April 2013 at 7:23 am #95087

    tony
    Participant

    Hi Helen & Mavis

    Glad you found my post encouraging. No bone invovement or major infections so far. I try to keep as fit as I can by biking to work,gardening and walking the dog. I had shingles and some major aches and pains after the SCT but soon back to normal. I have a few aches and pains at the moment but thats down to decorating. Looking forward to seeing England v the Barbarians next month at Twickenham and hope this good weather continues all summer.

    Love and best wishes Tony

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