25th infusion

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #42
    TerriNick said:

    clearer now

    Thanks Fox for the explanation. It does help and I sincerely hope that you go on enjoying the benefits of this treatment for many many years to come - until they find a cure..

    Terri :)

    clearer now

    Until they find a cure - no, Terri - let's hope that for some folks it is the cure.  Fox has done brilliantly and the fact that it's an immunomodulatory drug must hold out the hope that it could enable the body to cope with the cancer where it couldn't before getting the leg-up that the drug gives it.  Lots of hope around for us all!

  • alice124
    alice124 Member Posts: 896 Member
    #43
    Texas_wedge said:

    Nivo/ipi trial

    You should get some rapid responses at Smart Patients from those already in the trial, although it's too early to get much info other than initial responses.  I believe that nivolumab is better tolerated than ipilimumab which has been in use for a little while now for metastatic melanoma. 

    Shawn is pretty tough and must be a good candidate for this very promising trial.  Has he been on the 'pulsing'  regimen of Sutent (extra-high dose -> break -> extra-high dose)?

    Nivo/ipi Trial

    Kim / Tex,

    Forgive my ignorance on this trial but are the medications both delivered by infusion in this trial?

     

    Is this the same trial that Chuck (as in April and Chuck and Chuck who punched the goat) is on? I know I've been absent a bit but I haven't seen anything from them recently.

     

    Also, I see under clinical trials that John"s trial (Nivolumab/Votrient) is still listed as actively recruiting. But is that true or has this trial (Nivo/ipi) taken its place?  John's research nurse told me months ago that they were no longer recruiting for the Votrient/Nivo trial at Hopkins due to liver toxicities experienced by many patients, but it's still listed as "actively recruiting." 

  • faithlou
    faithlou Member Posts: 41
    #44
    Great News

    Great news fox!  Thank you for all the info.  Very well explained.

    Lou

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #45
    alice124 said:

    Nivo/ipi Trial

    Kim / Tex,

    Forgive my ignorance on this trial but are the medications both delivered by infusion in this trial?

     

    Is this the same trial that Chuck (as in April and Chuck and Chuck who punched the goat) is on? I know I've been absent a bit but I haven't seen anything from them recently.

     

    Also, I see under clinical trials that John"s trial (Nivolumab/Votrient) is still listed as actively recruiting. But is that true or has this trial (Nivo/ipi) taken its place?  John's research nurse told me months ago that they were no longer recruiting for the Votrient/Nivo trial at Hopkins due to liver toxicities experienced by many patients, but it's still listed as "actively recruiting." 

    Nivo/ipi trial

    Smart patients now has several different threads all about this trial [you can probably hear my teeth grinding all the way from Scotland!] In the Clinical trials search there you'll find full details (also via the Govt. site).  On the point you've asked, Alice, the answer is :

    Experimental
    Arm I-1: Nivolumab + Ipilimumab
    Nivolumab 3 mg/kg solution intravenously (IV) every 21 days during Induction phase and every 14 days during Maintenance phase until Progressive disease (PD), toxicity or discontinue for other reasons Ipilimumab 1mg/kg solution intravenously (IV) every 21 days during Induction phase (Ipilimumab will not be administered during Maintenance phase) until Progressive disease (PD), toxicity or discontinue for other reasons
    Biological
    Nivolumab
    Other Name
    BMS-936558 (MDX-1106)
    Biological
    Ipilimumab
    Other Name
    YERVOY™
    Experimental
    Arm I-3: Nivolumab + Ipilimumab
    Nivolumab 1mg/kg solution intravenously (IV) every 21 days during Induction phase and 3mg/kg solution intravenously (IV) every 14 days during Maintenance phase Ipilimumab 3mg/kg solution intravenously (IV) every 21 days during Induction phase. Ipilimumab will not be administered during Maintenance phase

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #46
    faithlou said:

    Great News

    Great news fox!  Thank you for all the info.  Very well explained.

    Lou

    Better and better - nivolumab + ipilimumab

    The great promise of this trial makes it all even more exciting.  Here's an inspiring story of someone who's been on that trial for a year and a half so far and is cancer free:

    http://www.salon.com/2013/05/17/my_truly_remarkable_cancer_breakthrough/

     Just for clarity - nivolumab is the trial drug Fox is on  and ipilimumab is the already FDA-approved drug (for melanoma, trade name Yervoy) which they're trying out on other cancers, including RCC.  Both are huge molecule monoclonal antibody drugs manufactured by BMS (Bristol Myers Squibb) and Ono Pharmaceuticals.

  • NewDay
    NewDay Member Posts: 272
    #47
    Thank you to trial parcticipants

    To all of you that participate in trials:

    In the past, I contimplated whether I would participate in a trial if I needed treatment and wasn't so sure I would.  After the comments here about how this treatment is not available to all who need it, I was thinking how fortunate we are that trials are available and that some patients are willing to participate, especially after reading an article last night that emphasized how important it is to make sure that those with "unclassified" histology are excluded from trials because it muddies the waters (my paraphrase).  That means that those of us in that group are left to only the approved drugs which would never be approved were it not for those of you who can and do participate.  I know that for some the decision is easy because they have run out of options, but I believe some of them and others are also motivated by the hope that their experience will benefit others down the road.  I am NED and hope I don't ever need treatment, but if I did, my options would be with drugs that, thanks to you all, would have been tried and approved.  Although I don't need treatment, I thank you now, because knowing there are promising options coming lessens my fears now.

    And, Fox, as always, you are a, and do, ROCK!

    Kathy

  • MDCinSC
    MDCinSC Member Posts: 574
    #48
    NewDay said:

    Thank you to trial parcticipants

    To all of you that participate in trials:

    In the past, I contimplated whether I would participate in a trial if I needed treatment and wasn't so sure I would.  After the comments here about how this treatment is not available to all who need it, I was thinking how fortunate we are that trials are available and that some patients are willing to participate, especially after reading an article last night that emphasized how important it is to make sure that those with "unclassified" histology are excluded from trials because it muddies the waters (my paraphrase).  That means that those of us in that group are left to only the approved drugs which would never be approved were it not for those of you who can and do participate.  I know that for some the decision is easy because they have run out of options, but I believe some of them and others are also motivated by the hope that their experience will benefit others down the road.  I am NED and hope I don't ever need treatment, but if I did, my options would be with drugs that, thanks to you all, would have been tried and approved.  Although I don't need treatment, I thank you now, because knowing there are promising options coming lessens my fears now.

    And, Fox, as always, you are a, and do, ROCK!

    Kathy

    NED is good!

    Enough said!  But you are right, without those doing trials, the world would be a more bleak place for those of us that follow!

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