*Nivolumab / Votrient Clinical Trial for One Putt (aka MDX 1106, BMS936558) UPDATE

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  • alice124
    alice124 Member Posts: 896 Member
    #22
    Parforthecourse said:

    Votrient

    I have been on 800 mg of Votrient since September of 2012 for my Stage 4 clear cell lung mets RCC.  I also hope to keep it going! I have not had any sores in my mouth but so many liquids and foods are intolerable due to a burn on my tongue.  Does every else have this? It makes food choices difficult.

    Votrient

    Parforthecourse,

    Sorry to hear you're experiencing tongue burns. I'm not sure if that is specifically addressed in the thread, “ Votrient Side Effects” because there’s a lot of information there. I know mouth sores, appetite, etc. have been covered but so have many other side effects that you probably will be interested in reading. In fact, I’d suggest you copy and post your question there. The other Votrient patients will see it there; I doubt they will here. Good luck to you; see you over there.

     

  • alice124
    alice124 Member Posts: 896 Member
    #23
    vtvickil said:

    Boo for Ground Glass

    Hi Alice

    Have been thinking about you and John - was so glad to read that John is still in the trial and (mostly) doing well with it.  The Ground Glass thing stinks but shouldn't knock him down for long.  Be aggressive with the treatment though - not something to mess around with.  Rick is out of the trial and after a pretty horrific winter is back on 800mg Votrient.  Scans in a few weeks will tell us if it is doing it job.  Hammers tried pretty hard to keep Rick in study but I guess with pneumonitis AND two rounds of pneumonia (2nd one nearly deadly) it was more of a risk than they were comfortable with.  We miss seeing you all in clinic but are cheering you on and hope that John continues to have much success!  The sooner this stuff gets approval the sooner Rick can get back on it - not that it's all about us or anything....Sending big hugs!

     

    Vicki

    Loucks Family

      

    Vicki,

    So very glad to hear Rick is back to a routine and not being treated from side effect to side effect. You guys have had an awful run. I just hope that the bad stuff ends here and there’s nothing but blue skies and rainbows from here on out.

    John and I just went in and searched “Caring Bridge” for any updates this past week, looking for new information about you guys, hoping all was okay. Thrilled that you checked in and answered our questions.  Here’s to clear scans in a couple weeks. Right now, I think John’s next appointment is May 2nd.  Maybe we'll still run into each other down the road.

     

  • vtvickil
    vtvickil Member Posts: 18
    #24
    Parforthecourse said:

    Votrient

    I have been on 800 mg of Votrient since September of 2012 for my Stage 4 clear cell lung mets RCC.  I also hope to keep it going! I have not had any sores in my mouth but so many liquids and foods are intolerable due to a burn on my tongue.  Does every else have this? It makes food choices difficult.

    Votrient SE's - Mouth

    Parforthecourse......

    I think everyone gets a little something different with the side effects.  Rick has no mouth sores but his teeth are now extremely sensative to cold.  Though that may be related more to the high dose steroids he was on rather than the Votrient.  Ice cream, cold drinks, even things that are overly sweet are all out for the moment.  He's even brushing with hot water these days.  Have switched to sensodyne toothpast but that doesn't seem to be helping much.   Hear they have a new one out that protects the enamel a bit more.  Will have to give that a try.

    Hope your issue subsides soon!

    Vicki

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