Hi I'm ed. Was diagnosed with M.M.+AL

This topic contains 2 replies, has 2 voices, and was last updated by  ed123 8 years, 11 months ago.

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  • 16th December 2015 at 7:26 am #125408

    ed123
    Participant

    Well where does one start with a journey like this .

    Everone feels there invincible until ha your confronted with the prospect of constant blood tests

    scans  and of course ultimately chemo.For me my journey started back in 209 Sept with a simple urine test.Since then I’ve relapsed 3 times have under gone trials with the Royal Free at there

    N.A.C. Unit.I’m at the moment in partial remisone but of course with other complications

    it’s hard to deal with this personel journey.Ed.

    16th December 2015 at 11:09 pm #125442

    andyg
    Participant

    Welcome to the forum Ed.

    I’ve been a member since I was diagnosed in October 2011 and found the forum very helpful. I learnt a lot from the more experienced myeloma patients and carers and received lots of support.

    No two journeys are the same with this bloody awful disease but if you have any questions or advice to give fire away. Even if you just want to moan about the unfairness of it all, shout or scream this is a good place to do it.

    I look forward to reading your posts.

    Every day is a gift.

    Andy

     

    16th December 2015 at 11:42 pm #125444

    ed123
    Participant

    Hello Andy.

    Thanks for answering my question.

    Yes I to like many other people thought why me it’s a natural thing to do as all your survival

    reactions kick in its a very freighting time to be told your life expectancy could be in a matter of months.O course  like so many others before me I hadn’t even heard of the disease.

    After the 1st course of chemo lasting  around six months I was delighted to find my light chains

    had reduced down to near normal.But unfortunately they started to rise after 13months.

    So began the treatment again.Of course AL amolode is no easy illness to cope with

    I must say The NAC  at  The Royal Free are excerllent I’m up there for repeated blood test

    Scans on a regular basis. At this present time I’m in partial  remisone.

    I hope that with continuous research a pattern from our own Genetic make up can help

    eradicate this awful disease.

    My wish is for further advancement into eliminating this will come in the forseeable future.

    Hope we keep in touch.Ed.

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