Trial over and feeling great

cww71964
cww71964 Member Posts: 97
in Kidney Cancer #1

Hi All,

So I just finished up the Everolimus trial, took my last pills on 3/20. I had a scan on Monday and oncologist appointment today. NED!! Feeling really good right now. I am not sure if I was getting the placebo or not but I definitely feel like I have more energy now. The Doc told me he has patients on Affinitor that have absolutely no side effects other than fatigue and that is all I ever felt but thought could be just because I am not a young buck. It has been 62 weeks since my surgery. Although i am done with the medication, I am still technically on the trial and have to follow-up with scans and labs every 6 months x 2 years, then yearly. I just want to say thanks to everyone here for the advice and words of encouragement. I also want to say to those newly diagnosed to be strong and confident. This is not a death sentence, you can recover and beat this thing.

Best wishes to all ,

Wayne

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Trial over

    That's really good to hear, Wayne.  It was a good decision that it feels as if you made only yesterday!  You achieved the objectives you were after and have come out well ahead.

    Do you happen to know how soon you'll discover whether you were on everolimus or placebo ? (Or maybe the design study won't permit you to ever know?)

    Are you looking forward to moving from skiing to golf soon?  How has the winter been, up there in the sky? Very best regards, TW

  • garym
    garym Member Posts: 1,647
    #3
    Way to go!!!

    Wayne,

    Good for you, man time flies, its great to hear that you are doing so well!  Your last two sentences say it all.

    Be well,

    Gary

  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    garym said:

    Way to go!!!

    Wayne,

    Good for you, man time flies, its great to hear that you are doing so well!  Your last two sentences say it all.

    Be well,

    Gary

    life status post ca.

    Nice progress Wayne! This is the survivors network. We need people like you here. Spread the Karma.

  • cww71964
    cww71964 Member Posts: 97
    #5
    Texas_wedge said:

    Trial over

    That's really good to hear, Wayne.  It was a good decision that it feels as if you made only yesterday!  You achieved the objectives you were after and have come out well ahead.

    Do you happen to know how soon you'll discover whether you were on everolimus or placebo ? (Or maybe the design study won't permit you to ever know?)

    Are you looking forward to moving from skiing to golf soon?  How has the winter been, up there in the sky? Very best regards, TW

    We didn't have a great

    We didn't have a great winter, better than last year but only 65% of normal. We could still get some spring storms, have seen it snow in late May. I am ready for summer, golfing, riding, kayaking, etc. I am making a commitment to golf more this year, even considering becoming a member at the course I live near.

    Thanks for all the well wishes gentlemen!

    Happy Easter!

  • alice124
    alice124 Member Posts: 896 Member
    #6
    trial

    Wonderful news Wayne. Am so happy for you. You so deserve to feel great!

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    Texas_wedge said:

    Trial over

    That's really good to hear, Wayne.  It was a good decision that it feels as if you made only yesterday!  You achieved the objectives you were after and have come out well ahead.

    Do you happen to know how soon you'll discover whether you were on everolimus or placebo ? (Or maybe the design study won't permit you to ever know?)

    Are you looking forward to moving from skiing to golf soon?  How has the winter been, up there in the sky? Very best regards, TW

    Study Design of Everest Study

    We hopefully will never know. They don't unblind unless disease progresses or serious side effects occur that require knowing for treatment purposes. The study is 10 years. Scans every 18 weeks for the first year while on the drug/placebo, then every 6 months the second year, then annually after that to 10 years.

    Great news Wayne. I'm glad to hear it!

    I'm also really only having fatigue and occasional nausea or more frequent colds. Minor stuff. My blood tests were all normal. I've decided I'm either on the placebo, or the side effects are really pretty minor. I hope I'm on the real thing, because I would like to have more energy and feel better and I'm looking forward to that next year.

    Todd

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #8
    todd121 said:

    Study Design of Everest Study

    We hopefully will never know. They don't unblind unless disease progresses or serious side effects occur that require knowing for treatment purposes. The study is 10 years. Scans every 18 weeks for the first year while on the drug/placebo, then every 6 months the second year, then annually after that to 10 years.

    Great news Wayne. I'm glad to hear it!

    I'm also really only having fatigue and occasional nausea or more frequent colds. Minor stuff. My blood tests were all normal. I've decided I'm either on the placebo, or the side effects are really pretty minor. I hope I'm on the real thing, because I would like to have more energy and feel better and I'm looking forward to that next year.

    Todd

     

    Study Design of Everest Study

    Thanks for the info Todd.  I'm sure you'll find that energy again soon.

Discussion Boards