Those of you NED.....

gregslovey
gregslovey Member Posts: 33
in Kidney Cancer #1

My hubs is going for some new scans Feb 2.  The last ones in Nov showed that the only "active" disease were two small (7mm) nodules in his lungs.  we are hoping those two are gone when we scan in Feb.  The question I have for all of you is, what treatement are you on while you are NED?  Are you still taking the regimen that got you there?  Or just scan to see what pops up next?  Or reduced dosages...?  His doc told him he will have to stay on Votrient indefinitly.  Wondering how everyone else handles it?

Thanks


Toni

Comments

  • rhominator
    rhominator Member Posts: 233 Member
    #2
    Maintenance Dosage of Votrient

    During my 2014-2015 NED status, I was on a maintenance level dosage of Votrient until there were signs of progression.  My profile has the details.

    I'm hoping it works as well for your husband, or better, as it did for me.

  • foroughsh
    foroughsh Member Posts: 779 Member
    #3
    I am stage two and have been

    I am stage two and have been NED since surgery. No treatment since surgery, just routine scans

    Forough

  • gregslovey
    gregslovey Member Posts: 33
    #4
    rhominator said:

    Maintenance Dosage of Votrient

    During my 2014-2015 NED status, I was on a maintenance level dosage of Votrient until there were signs of progression.  My profile has the details.

    I'm hoping it works as well for your husband, or better, as it did for me.

    thank you

    that is helpful.  He is battling depression right now, but is on the upward path.  Other than that, the side effects from Votrient are "liveable".  He does not have the severe diarrhea, his pain is gone (from Claritin...crazy).  He does have the fatigue and weakness, but if he takes a nap in the afternoon after work he's ok til bedtime.  If he can go to a lower dose to feel just a bit better, it would do him a world of good.

    I always appreciate your insight since you have been on this medication for an extended period of time.  It certainly helps to get a perspective from one who's been there.

    Good luck on the Opdivo and have fun wrenching : )


    Toni

  • Bay Area Guy
    Bay Area Guy Member Posts: 620 Member
    #5
    No special regimen other than

    No special regimen other than scans for me.  Just passed seven months, so I've had one follow-up scan.

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2017 #6
    NED

    After my nephrectomy I was NED for 2 years. The first year I did an adjuvant study (placebo vs Everolimus) but turns out I was on placebo. Next tumor was adrenal gland 2 years ago. They took that out. Have been NED since. No treatment. Get CT scans of my chest/abdomen/pelvis every three months.

    Best of luck!

    Todd

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