AL Amyloidosis carer

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

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  • #120951

    lynneb01
    Participant

    Hi

    Im currently getting ready for a very long journey with my husband with his amyloid treatment.

    He is getting ready for the VCD treatment and we are very scared and unsure what to expect.

    is there anyone else caring that could give me the advice needed.

    lynne

    #121022

    amanda
    Participant

    I had VCD treatment last year I had levels in light chain of 4000 which apparently is quite high with a kidney function of only 6%. I have dialysis 3 times a week.  I was before this year a very fit and healthy woman and was enjoying my life.  After the VCD which I didn’t find difficult at all I had reduced my level to 2000.  Not as low as the doctor had hoped but this was possibly due to the fact that dialysis was reducing the impact of the treatment .  I am now on a higher dose of VCD and taking thalidomide too.  This is to increase the strength to try to impact the cancer cells to die.  Don’t be scared of the treatment its not as bad as you think.  Its the unknown that is terrifying but it all does work even if it may be a bit slow at first.  good luck with your treatment I pretty confident that you will sail through it like I did.  Good luck. God bless. Amanda.

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