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Ipi/Nivo – When to take a break from nivo?
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Ipi/Nivo – When to take a break from nivo?

› Forums › General Melanoma Community › Ipi/Nivo – When to take a break from nivo?

  • Post
    • December 5, 2016 at 6:41 am
    Mat
    Participant

      In light of some recent posts and the NYT article on diabetes/side effects, I'm curious–for those on ipi/nivo, have you stopped or taken a break from nivo?  I started the combo in January 2016 (and am very grateful for stable results since), so I've probably had ~20 infusions of nivo.  I've also been on prednisone (20 mg/day) for most of the time for varying side effects (all relatively manageable and minor).  I've started the conversation with my onc on taking a break for a month or so (not necessarily stopping) assuming continuing stability at next scans.  No final decision yet and am curious about others actual experience with ipi/nivo.  (I've seen others' post over time on nivo or Keytruda alone.)  Thanks.

    Viewing 11 reply threads
    • Replies
        • December 5, 2016 at 4:04 pm
        Polymath
        Participant

          Hi Mat,

          Great question and one I have been wondering about myself.  It seems anecdotally that those who respond, respond, and generally the response is durable, even for those who cannot even get through full treatment protocol.  And then there are those who (like you and me) who cannot claim much more than stability and/or slight improvement over a longer treatment timeline.  As I get ready ready to give up the fight via immunotherapy and resort to surgery to rid my body of stubborn non-responding tumors I really wonder what's next?  I'm tired of the every two-week grind of blood draws and infusions and think maybe it's time to give it a rest.  Besides, my insurance will likely cut me off anyway with no measurable disease after surgery and it some ways I'm looking forward to the break.  Only future scans will reveal whether the mel comes back quickly or whether the immune system has learned to identify and fight the beast.

          Gary

          • December 5, 2016 at 4:04 pm
          Polymath
          Participant

            Hi Mat,

            Great question and one I have been wondering about myself.  It seems anecdotally that those who respond, respond, and generally the response is durable, even for those who cannot even get through full treatment protocol.  And then there are those who (like you and me) who cannot claim much more than stability and/or slight improvement over a longer treatment timeline.  As I get ready ready to give up the fight via immunotherapy and resort to surgery to rid my body of stubborn non-responding tumors I really wonder what's next?  I'm tired of the every two-week grind of blood draws and infusions and think maybe it's time to give it a rest.  Besides, my insurance will likely cut me off anyway with no measurable disease after surgery and it some ways I'm looking forward to the break.  Only future scans will reveal whether the mel comes back quickly or whether the immune system has learned to identify and fight the beast.

            Gary

            • December 5, 2016 at 4:04 pm
            Polymath
            Participant

              Hi Mat,

              Great question and one I have been wondering about myself.  It seems anecdotally that those who respond, respond, and generally the response is durable, even for those who cannot even get through full treatment protocol.  And then there are those who (like you and me) who cannot claim much more than stability and/or slight improvement over a longer treatment timeline.  As I get ready ready to give up the fight via immunotherapy and resort to surgery to rid my body of stubborn non-responding tumors I really wonder what's next?  I'm tired of the every two-week grind of blood draws and infusions and think maybe it's time to give it a rest.  Besides, my insurance will likely cut me off anyway with no measurable disease after surgery and it some ways I'm looking forward to the break.  Only future scans will reveal whether the mel comes back quickly or whether the immune system has learned to identify and fight the beast.

              Gary

              • December 6, 2016 at 2:39 am
              Bubbles
              Participant

                That is the million dollar question. In my study we were given nivo alone for 2 1/2 years and then had to stop because that was the deal….no matter what the ratties wanted….and we've done pretty well! And many researchers contend that folks don't need to take anti-PD1 nearly that long. But more applicable to your case….there was this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                Hope that helps. Hang in there! C

                 

                • December 6, 2016 at 2:39 am
                Bubbles
                Participant

                  That is the million dollar question. In my study we were given nivo alone for 2 1/2 years and then had to stop because that was the deal….no matter what the ratties wanted….and we've done pretty well! And many researchers contend that folks don't need to take anti-PD1 nearly that long. But more applicable to your case….there was this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                  Hope that helps. Hang in there! C

                   

                  • December 6, 2016 at 2:39 am
                  Bubbles
                  Participant

                    That is the million dollar question. In my study we were given nivo alone for 2 1/2 years and then had to stop because that was the deal….no matter what the ratties wanted….and we've done pretty well! And many researchers contend that folks don't need to take anti-PD1 nearly that long. But more applicable to your case….there was this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                    Hope that helps. Hang in there! C

                     

                    • December 6, 2016 at 7:47 pm
                    Mat
                    Participant

                      Thanks Gary and Celeste.  Truly a "high class" problem for a Stage IV patient.  Happy holidays.

                      • December 6, 2016 at 7:47 pm
                      Mat
                      Participant

                        Thanks Gary and Celeste.  Truly a "high class" problem for a Stage IV patient.  Happy holidays.

                        • December 6, 2016 at 7:47 pm
                        Mat
                        Participant

                          Thanks Gary and Celeste.  Truly a "high class" problem for a Stage IV patient.  Happy holidays.

                          • December 11, 2016 at 6:27 pm
                          AshleyS
                          Participant

                            Hey Mat,

                            I'm at MDA now. I have a brain MRI in 2 hours and a PET in the morning. I started the combo in March 2015 and received 3 infusions. I had a single Ipi infusion in May 2015 and started my nivo monotherapy in June 2015. I've been NED/NEAD/NERD (there's no growing mets, but I have small spots) since November 2015. I'm still getting an infusion every 2 weeks (I think I'm in the 50s). The big question for my doc is if I'm still remaining on the drug. I think she'll tell me sometime between March to June I can go off. I've never really had "the talk" with her because I don't want to jinx things!!!!!

                            Best of luck!

                            Ashley

                            • December 11, 2016 at 6:27 pm
                            AshleyS
                            Participant

                              Hey Mat,

                              I'm at MDA now. I have a brain MRI in 2 hours and a PET in the morning. I started the combo in March 2015 and received 3 infusions. I had a single Ipi infusion in May 2015 and started my nivo monotherapy in June 2015. I've been NED/NEAD/NERD (there's no growing mets, but I have small spots) since November 2015. I'm still getting an infusion every 2 weeks (I think I'm in the 50s). The big question for my doc is if I'm still remaining on the drug. I think she'll tell me sometime between March to June I can go off. I've never really had "the talk" with her because I don't want to jinx things!!!!!

                              Best of luck!

                              Ashley

                              • December 11, 2016 at 6:27 pm
                              AshleyS
                              Participant

                                Hey Mat,

                                I'm at MDA now. I have a brain MRI in 2 hours and a PET in the morning. I started the combo in March 2015 and received 3 infusions. I had a single Ipi infusion in May 2015 and started my nivo monotherapy in June 2015. I've been NED/NEAD/NERD (there's no growing mets, but I have small spots) since November 2015. I'm still getting an infusion every 2 weeks (I think I'm in the 50s). The big question for my doc is if I'm still remaining on the drug. I think she'll tell me sometime between March to June I can go off. I've never really had "the talk" with her because I don't want to jinx things!!!!!

                                Best of luck!

                                Ashley

                            Viewing 11 reply threads
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