The end of my Pomalidomide journey.

This topic contains 5 replies, has 5 voices, and was last updated by  andyg 7 years, 6 months ago.

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  • 18th March 2017 at 8:09 am #132344

    andyg
    Participant

    Hi All,

    well after 40 cycles of Pomalidomide I’ve had to say goodbye to Pomalidomide. It’s been a good journey with minimal side effects though there have been a couple of serious bumps along the way. I’m due to start a trial early next month after a little holiday in the lakes. Fingers crossed the trial works and I get a bit more time to have a few more holidays.

    I hope everything is going okay everyone.

    Every day is a gift.

    Andy xx

    18th March 2017 at 11:20 am #132346

    davidbr
    Participant

    Wish You well Andy

    Regards Davidbr

    18th March 2017 at 2:38 pm #132347

    janw
    Participant

    Hi Andy

    You’ve done so well on 40 cycles of Pomalidomide which has managed to keep your myeloma under control. I hope the MUK8 trial works just as well for you, with minimal side effects. It’s certainly discouraging news this week that Daratumumab hasn’t been approved by NICE, especially after it was fast tracked in Europe. It’s so frustrating to know there are new myeloma drugs available, which have proved themselves to be effective in clinical trials, but are not available for patients in the UK. There is still an unmet need for patients with myeloma who no longer respond to existing therapies.

    Enjoy your few weeks with no drugs. All the best for your new treatment.

    Jan x

    18th March 2017 at 6:29 pm #132348

    susie
    Participant

    Hi Andy

    I do wish you all the very best on your new trial. You deserve it.

    Best wishes

    susie

    22nd March 2017 at 3:38 pm #132475

    bmw3201
    Participant

    Hi Andy hope you’re well. On my third cycle. Protien just the same . Did yours come down quick

    21st April 2017 at 4:10 am #133114

    andyg
    Participant

    Hi Stephen.

    Are you on Pomalidomide or the MUK 8 trial? On Pomalidomide my PPs came down slowly, I think, over the first few cycles. To about 8. Then gradually rose to the mid teens where they hung about for about eighteen months then began to rise again.

    When I as on Revlimid nothing had for the first few cycles then they added Cyclophosphamide to the mix and my PPs came down to approximately 11. I stayed on Revlimid for nearly two years.

    I haven’t finished my first cycle of MUK 8 yet so I don’t know how it’s going.

    Every day is a gift

    Andy

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