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clinical trial experience?

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  • Post
    • January 6, 2014 at 4:46 pm
    Ty
    Participant

      Hi,    (third attempt to get posted past the scam filter!)

      My wife is 5 months into the Ipi/nivo trial and has yet to see a positive response… though has had some of the nastier side effects.   Has anyone been on this trial and seen a response this late into the treatments?

      Thanks, 

      Ty

    Viewing 5 reply threads
    • Replies
        • January 9, 2014 at 1:56 pm
        Tina D
        Participant

          I am not on that particular trial, but I do know that ipi can have a very delayed response… up to a year into it. Has the disease been stable since starting, or are there changes?

          Tina

          • January 9, 2014 at 1:56 pm
          Tina D
          Participant

            I am not on that particular trial, but I do know that ipi can have a very delayed response… up to a year into it. Has the disease been stable since starting, or are there changes?

            Tina

              • January 11, 2014 at 3:30 am
              Ty
              Participant

                Tina,  the disease has been fairly stable…. the first follow up scan showed slight increases in some tumor size…. but we believe, as does her doctor, that the symptoms she is experiencing have been largely caused by the treatments, not the disease. 

                Ty

                • January 11, 2014 at 3:30 am
                Ty
                Participant

                  Tina,  the disease has been fairly stable…. the first follow up scan showed slight increases in some tumor size…. but we believe, as does her doctor, that the symptoms she is experiencing have been largely caused by the treatments, not the disease. 

                  Ty

                  • January 11, 2014 at 3:30 am
                  Ty
                  Participant

                    Tina,  the disease has been fairly stable…. the first follow up scan showed slight increases in some tumor size…. but we believe, as does her doctor, that the symptoms she is experiencing have been largely caused by the treatments, not the disease. 

                    Ty

                  • January 9, 2014 at 1:56 pm
                  Tina D
                  Participant

                    I am not on that particular trial, but I do know that ipi can have a very delayed response… up to a year into it. Has the disease been stable since starting, or are there changes?

                    Tina

                    • January 12, 2014 at 1:13 pm
                    BrianP
                    Participant

                      Ty,

                      Are you guys in a sequential or concurrent Ipi/Nivo trial?  If sequential what doses has she received so far?  Not sure how aggressive your wife's disease was prior to starting the trial but if she's stable that could be a good sign that she's still a responder.  Like someone else said, IPI can take quite a while to start working.  I wish you all the best for future results.

                      Brian

                      • January 12, 2014 at 1:13 pm
                      BrianP
                      Participant

                        Ty,

                        Are you guys in a sequential or concurrent Ipi/Nivo trial?  If sequential what doses has she received so far?  Not sure how aggressive your wife's disease was prior to starting the trial but if she's stable that could be a good sign that she's still a responder.  Like someone else said, IPI can take quite a while to start working.  I wish you all the best for future results.

                        Brian

                        • January 12, 2014 at 1:13 pm
                        BrianP
                        Participant

                          Ty,

                          Are you guys in a sequential or concurrent Ipi/Nivo trial?  If sequential what doses has she received so far?  Not sure how aggressive your wife's disease was prior to starting the trial but if she's stable that could be a good sign that she's still a responder.  Like someone else said, IPI can take quite a while to start working.  I wish you all the best for future results.

                          Brian

                            • January 13, 2014 at 5:02 pm
                            Ty
                            Participant

                              Brian,    Thanks for your comments.    My wife is in the sequential trial…. receiving just 2 of 4 doses of ipi and 3 of the 6 doses of nivo…. in both cases side effects caused us to halt further treatments.   We are waiting to see if she will be allowed to continue with additional nivo treatments and should hear from BMS this week.    

                              • January 13, 2014 at 5:02 pm
                              Ty
                              Participant

                                Brian,    Thanks for your comments.    My wife is in the sequential trial…. receiving just 2 of 4 doses of ipi and 3 of the 6 doses of nivo…. in both cases side effects caused us to halt further treatments.   We are waiting to see if she will be allowed to continue with additional nivo treatments and should hear from BMS this week.    

                                • January 13, 2014 at 5:02 pm
                                Ty
                                Participant

                                  Brian,    Thanks for your comments.    My wife is in the sequential trial…. receiving just 2 of 4 doses of ipi and 3 of the 6 doses of nivo…. in both cases side effects caused us to halt further treatments.   We are waiting to see if she will be allowed to continue with additional nivo treatments and should hear from BMS this week.    

                                  • January 16, 2014 at 2:09 pm
                                  Tina D
                                  Participant

                                    Keep us posted as to what you find out. I agree with Brian, that the fact scans remain stable, at least seems to show that the disease has been halted from progressing. Such a difficult journey this can be as we evaluate, watch, wait, research, plan, etc. You seem like a great advocate for/ and research partner with you wife.

                                    Will be anxious to hear just what BMS decides…

                                    Tina

                                    • January 16, 2014 at 2:09 pm
                                    Tina D
                                    Participant

                                      Keep us posted as to what you find out. I agree with Brian, that the fact scans remain stable, at least seems to show that the disease has been halted from progressing. Such a difficult journey this can be as we evaluate, watch, wait, research, plan, etc. You seem like a great advocate for/ and research partner with you wife.

                                      Will be anxious to hear just what BMS decides…

                                      Tina

                                      • January 16, 2014 at 2:09 pm
                                      Tina D
                                      Participant

                                        Keep us posted as to what you find out. I agree with Brian, that the fact scans remain stable, at least seems to show that the disease has been halted from progressing. Such a difficult journey this can be as we evaluate, watch, wait, research, plan, etc. You seem like a great advocate for/ and research partner with you wife.

                                        Will be anxious to hear just what BMS decides…

                                        Tina

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