Tips for coping with side-effects from DVD?

This topic contains 2 replies, has 2 voices, and was last updated by  Anonymous 4 years, 10 months ago.

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  • #140950

    Anonymous

    Hello Myeloma Forum community. This is my first post. I am about to start second-line treatment and I have been reading about the side-effects of DVD (Daratumumab, Velcade and Dex). Has anyone got any good practical tips for managing these? When I was first diagnosed in 2012, I had just started a new job and I never got round to joining the forum but now I am retired, I have more time. I’ve enjoyed every moment of complete remission following a SCT in January 2013 but the challenge of first relapse is beginning to dawn on me. I am very grateful to be in the DVD window (I think March 2019 is when NICE approved it for first relapse) so I’m hoping to make the best of it and any practical hints from anyone who is/has been on it would be great.

    #140954

    gcoulter
    Participant

    Hi

    I mentioned those pesky steriods in another post.
    My advice would be to get ready for the mood swings and have some meditation music on tap!
    The neuropathy kicked in a bit earlier, but has been manageable as the velcade dose isn’t as high.
    After the third cycle they’ve reduced the dose of this to minimise the neuropathy.

    My wife hasn’t had any real side effect from the Dara, apart from a bit of tiredness. Her platlettes went down a few times but stayed high enough to stay on treatment.

    Graham

    #140967

    Anonymous

    Hi Graham,

    Thank you for your reply and for the practical tips. I’m glad and encouraged that your wife hasn’t had too much bother with the Dara, as the information sheet doesn’t make cheerful reading. I hope the treatment is continuing to go well for her.

    Of course every possibility has to be covered. I remember one of the medications for first-line treatment warned of the possibility of developing ‘a black hairy tongue’ and I’m forever grateful I didn’t develop one of those!!

    I read somewhere else recently that massaging the hands and feet with cocoa butter can help with the PN so I’m going to try that, as well as the relaxing music that you suggested.

    In a weird way I’m looking forward to getting started now and ticking off the cycles. It’s an unusual New Year’s resolution to be sure!

    Rachel

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