What now?

This topic contains 1 reply, has 2 voices, and was last updated by  Helen 7 years, 5 months ago.

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  • #133630

    Gerry
    Participant

    Hello – just wondering if anyone else is in a similar position.
    I was diagnosed with lamda lightchain myeloma in 2012, and immediately entered into a Trial – Cyclophosphomide, Dexamethasone and Lenalidamide. I had 12 months remission.
    Thalidamide was then tried, to no effect, so I was put on Valcade and Dexamethosone which resulted in a few months remission. After that a course of Lenalidamide and Dexamethosone was started in May last year and although coping at first, the regime is no longer working. Our consultant is looking into appropriate Trials now. Has anyone else entered one of these a distance away, and how have you coped. This is obviously not a good time for me. Any helpful and encouraging comments would be so appreciated.

    #133781

    Helen
    Participant

    Hi Gerry
    Has anyone suggested Pomalidomide? It’s available now? As for trials a distance away- several people I’ve met recently travel 2-3 hours to be in the trial I’m in and others- they don’t seem unduly concerned about it though they do find very tiring
    Love Helen

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