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Do people who do not response to Yervoy/Ipi still get the side effects?
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Do people who do not response to Yervoy/Ipi still get the side effects?

› Forums › General Melanoma Community › Do people who do not response to Yervoy/Ipi still get the side effects?

  • Post
    • July 1, 2016 at 4:36 pm
    MoiraM
    Participant

      I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

      When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

      I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

      If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

      Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

    Viewing 5 reply threads
    • Replies
        • July 1, 2016 at 6:12 pm
        Bubbles
        Participant

          Hi Moira,

          This is an important question that I don't think the experts have a complete answer to.  However, I think it is clear that our immune systems can attack our good functioning cells, not just melanoma…as happens in many immune related diseases from asthma to lupus to arthritis…and even more so when our t cells are put into overdrive by immunotherapy.  Additionally, melanoma is a very sneaky beast and is able to shroud itself from attack in ways that our thyroids, pituitary glands, skin cells, etc cannot.

          But…I'll share the best real evidence I have and a lot of it is positive!

          Here two experts discuss side effects to both immunotherapy and targeted therapy and note:  "Toxicity does not equal a response, but there appears to be a weak association."  Here's the post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

          Here in a nivo/ipi trial, it was noted that even patients who had to stop treatment early due to side effects, their 18 month OS was similar to those who took all the doses.  Now, it doesn't say so exactly…but you might infer that those side effects were obviously due to an extreme immune response…and that same response was what fought off their melanoma.  Here's the report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

          Because of the spam blocker…I will attach more below…..

           

          • July 1, 2016 at 6:12 pm
          Bubbles
          Participant

            Hi Moira,

            This is an important question that I don't think the experts have a complete answer to.  However, I think it is clear that our immune systems can attack our good functioning cells, not just melanoma…as happens in many immune related diseases from asthma to lupus to arthritis…and even more so when our t cells are put into overdrive by immunotherapy.  Additionally, melanoma is a very sneaky beast and is able to shroud itself from attack in ways that our thyroids, pituitary glands, skin cells, etc cannot.

            But…I'll share the best real evidence I have and a lot of it is positive!

            Here two experts discuss side effects to both immunotherapy and targeted therapy and note:  "Toxicity does not equal a response, but there appears to be a weak association."  Here's the post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

            Here in a nivo/ipi trial, it was noted that even patients who had to stop treatment early due to side effects, their 18 month OS was similar to those who took all the doses.  Now, it doesn't say so exactly…but you might infer that those side effects were obviously due to an extreme immune response…and that same response was what fought off their melanoma.  Here's the report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

            Because of the spam blocker…I will attach more below…..

             

            • July 1, 2016 at 6:12 pm
            Bubbles
            Participant

              Hi Moira,

              This is an important question that I don't think the experts have a complete answer to.  However, I think it is clear that our immune systems can attack our good functioning cells, not just melanoma…as happens in many immune related diseases from asthma to lupus to arthritis…and even more so when our t cells are put into overdrive by immunotherapy.  Additionally, melanoma is a very sneaky beast and is able to shroud itself from attack in ways that our thyroids, pituitary glands, skin cells, etc cannot.

              But…I'll share the best real evidence I have and a lot of it is positive!

              Here two experts discuss side effects to both immunotherapy and targeted therapy and note:  "Toxicity does not equal a response, but there appears to be a weak association."  Here's the post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

              Here in a nivo/ipi trial, it was noted that even patients who had to stop treatment early due to side effects, their 18 month OS was similar to those who took all the doses.  Now, it doesn't say so exactly…but you might infer that those side effects were obviously due to an extreme immune response…and that same response was what fought off their melanoma.  Here's the report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

              Because of the spam blocker…I will attach more below…..

               

              • July 1, 2016 at 6:24 pm
              Bubbles
              Participant

                To continue….

                Here is a report about how patients who developed skin related side effects (from rashes to itching to vitiligo) when on Pembrolizumab/Keytruda showed better responses.  There are additional links within to an ASCO 2015 report about the side effects associated with a response to Nivo/Opdivo…which said:  "Statistically significant progression free survival and overall survival differences were seen in any patients who experienced any grade of advserse event."  Here's the post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                And finally, here is a report out of ASCO 2016 looking at response rates to ipi vs ipi/nivo as well as another report just looking at response rates to ipi….all through the levels of various t cells and their actions.  Here's that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html

                Additionally, in about the middle of the posted noted above there is a specific report on blood markers associated to a response with ipi.

                Figuring out who is reponding, in the quickest, least invasive way is something that I think researchers are working hard on at the moment.  Hope this has helped.  I wish you well.  Celeste

                  • July 1, 2016 at 7:53 pm
                  MoiraM
                  Participant

                    Thank you. I shall check out all the links.

                    • July 1, 2016 at 7:53 pm
                    MoiraM
                    Participant

                      Thank you. I shall check out all the links.

                      • July 1, 2016 at 7:53 pm
                      MoiraM
                      Participant

                        Thank you. I shall check out all the links.

                        • July 1, 2016 at 8:04 pm
                        MoiraM
                        Participant

                          Excellent stuff. Hopefully they will have blood makrers soon so they can monitor the process other than by side effects!

                          And, hopefully, my doctors are right and only people like me, which have responded will end up with side effects like mine.

                          • July 1, 2016 at 8:04 pm
                          MoiraM
                          Participant

                            Excellent stuff. Hopefully they will have blood makrers soon so they can monitor the process other than by side effects!

                            And, hopefully, my doctors are right and only people like me, which have responded will end up with side effects like mine.

                            • July 1, 2016 at 8:04 pm
                            MoiraM
                            Participant

                              Excellent stuff. Hopefully they will have blood makrers soon so they can monitor the process other than by side effects!

                              And, hopefully, my doctors are right and only people like me, which have responded will end up with side effects like mine.

                              • July 1, 2016 at 9:21 pm
                              Bubbles
                              Participant

                                Sorry for all you have dealt with.  It is a terrible price to have to withstand such side effects in order to avoid further melanoma devastation!!!  Hopefully, better treatments with fewer side effects will be forthcoming.  But for now….   Hang in there.  Celeste

                                • July 1, 2016 at 9:21 pm
                                Bubbles
                                Participant

                                  Sorry for all you have dealt with.  It is a terrible price to have to withstand such side effects in order to avoid further melanoma devastation!!!  Hopefully, better treatments with fewer side effects will be forthcoming.  But for now….   Hang in there.  Celeste

                                  • July 1, 2016 at 9:21 pm
                                  Bubbles
                                  Participant

                                    Sorry for all you have dealt with.  It is a terrible price to have to withstand such side effects in order to avoid further melanoma devastation!!!  Hopefully, better treatments with fewer side effects will be forthcoming.  But for now….   Hang in there.  Celeste

                                    • July 2, 2016 at 12:27 am
                                    JoshF
                                    Participant

                                      Always with the info!! You're awesome Bubbles! Now if you can only tell me if my T cells are exhausted. I certainly am after everything at MDA this week and getting first dose of ipi today. 

                                      The vitiligo throws me off because I have it…not bad though. Also when surgeon took sub-q she showed me what necrosis looked like because she was certain it was there. Let's pray this 2nd go around with ipi is boost I need. All this data freaks me out but I so appreciate you.

                                      Josh

                                      • July 2, 2016 at 12:27 am
                                      JoshF
                                      Participant

                                        Always with the info!! You're awesome Bubbles! Now if you can only tell me if my T cells are exhausted. I certainly am after everything at MDA this week and getting first dose of ipi today. 

                                        The vitiligo throws me off because I have it…not bad though. Also when surgeon took sub-q she showed me what necrosis looked like because she was certain it was there. Let's pray this 2nd go around with ipi is boost I need. All this data freaks me out but I so appreciate you.

                                        Josh

                                        • July 2, 2016 at 12:56 am
                                        Bubbles
                                        Participant

                                          Hey Joshie!

                                          Your first few words made me laugh and plan to respond…."No idea if your t cells are exhausted, but I bet YOU are!"…but you said as much yourself! Sorry buddy. Wish I had more real and absolute answers…but…  Hang in there, my friend! Love, c

                                          • July 2, 2016 at 12:56 am
                                          Bubbles
                                          Participant

                                            Hey Joshie!

                                            Your first few words made me laugh and plan to respond…."No idea if your t cells are exhausted, but I bet YOU are!"…but you said as much yourself! Sorry buddy. Wish I had more real and absolute answers…but…  Hang in there, my friend! Love, c

                                            • July 2, 2016 at 12:56 am
                                            Bubbles
                                            Participant

                                              Hey Joshie!

                                              Your first few words made me laugh and plan to respond…."No idea if your t cells are exhausted, but I bet YOU are!"…but you said as much yourself! Sorry buddy. Wish I had more real and absolute answers…but…  Hang in there, my friend! Love, c

                                              • July 2, 2016 at 12:27 am
                                              JoshF
                                              Participant

                                                Always with the info!! You're awesome Bubbles! Now if you can only tell me if my T cells are exhausted. I certainly am after everything at MDA this week and getting first dose of ipi today. 

                                                The vitiligo throws me off because I have it…not bad though. Also when surgeon took sub-q she showed me what necrosis looked like because she was certain it was there. Let's pray this 2nd go around with ipi is boost I need. All this data freaks me out but I so appreciate you.

                                                Josh

                                              • July 1, 2016 at 6:24 pm
                                              Bubbles
                                              Participant

                                                To continue….

                                                Here is a report about how patients who developed skin related side effects (from rashes to itching to vitiligo) when on Pembrolizumab/Keytruda showed better responses.  There are additional links within to an ASCO 2015 report about the side effects associated with a response to Nivo/Opdivo…which said:  "Statistically significant progression free survival and overall survival differences were seen in any patients who experienced any grade of advserse event."  Here's the post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                                                And finally, here is a report out of ASCO 2016 looking at response rates to ipi vs ipi/nivo as well as another report just looking at response rates to ipi….all through the levels of various t cells and their actions.  Here's that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html

                                                Additionally, in about the middle of the posted noted above there is a specific report on blood markers associated to a response with ipi.

                                                Figuring out who is reponding, in the quickest, least invasive way is something that I think researchers are working hard on at the moment.  Hope this has helped.  I wish you well.  Celeste

                                                • July 1, 2016 at 6:24 pm
                                                Bubbles
                                                Participant

                                                  To continue….

                                                  Here is a report about how patients who developed skin related side effects (from rashes to itching to vitiligo) when on Pembrolizumab/Keytruda showed better responses.  There are additional links within to an ASCO 2015 report about the side effects associated with a response to Nivo/Opdivo…which said:  "Statistically significant progression free survival and overall survival differences were seen in any patients who experienced any grade of advserse event."  Here's the post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                                                  And finally, here is a report out of ASCO 2016 looking at response rates to ipi vs ipi/nivo as well as another report just looking at response rates to ipi….all through the levels of various t cells and their actions.  Here's that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html

                                                  Additionally, in about the middle of the posted noted above there is a specific report on blood markers associated to a response with ipi.

                                                  Figuring out who is reponding, in the quickest, least invasive way is something that I think researchers are working hard on at the moment.  Hope this has helped.  I wish you well.  Celeste

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