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Failed Keytruda Urgent Advice Needed

Forums General Melanoma Community Failed Keytruda Urgent Advice Needed

  • Post
    Squash
    Participant

      I need some advice on treatment options.

      I have mets everywhere in the liver, bones, spine, neck, lymph nodes , lungs and abdominal wall.

      I have been on Keytruda for five months.

      The doctor wants to switch me to Nivo to see if i respond to nivo. He says he has patients that responded to Nivo that didnt respond to Keytruda but I believe it is basically the same drug so am not really keen on doing it.

      I mentioned Ipi and he said i could try that.

      What do other people think? Which is the better option?

      Thanks

       

       

       

       

       

    Viewing 11 reply threads
    • Replies
        JuTMSY4
        Participant

          Hello – sorry about your position, but fortunately options are ever-expanding.

          My doc said similar things re: pembro vs. nivo.  Contrary to the media and a few other sources, they are not the same.  Whether that changes biological responses or not is not known.  This thread (from here) supplies lots of information:

          http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/nivolumab-vs-keytruda

          One alternative you could consider is a nivo+ipi combo.  That was in trial and I believe was approved in some form (someone more educated than me can explain, most likely).  

          There's also ACT which has been discussed on here ad nauseum and most likely explained better than I could.  My doc and I discussed this as well, but its a much more disruptive choice than most standard infusions.  

          Good luck – j

            Squash
            Participant

              The doctor says IPI/Nivo combo too toxic for me to handle in my conditon.

              pookerpb
              Participant

                Prayers to you!!  My husband failed Ipi first, then failed Keytruda with interpheron combo in trial this past 4 months. He was on Ipi for 8 months before progression set in, and them on Keytruda for another 8 when the same thing happened. Our melanoma specialist also told us that the Nivo/Ipi combo was too toxic at this point. We are doing another trial, which is more toxic so not sure what the thinking behind it is.

                Good luck to you and keep us posted! Iwill be interested in what you decide to do.

                 

                pookerpb
                Participant

                  Prayers to you!!  My husband failed Ipi first, then failed Keytruda with interpheron combo in trial this past 4 months. He was on Ipi for 8 months before progression set in, and them on Keytruda for another 8 when the same thing happened. Our melanoma specialist also told us that the Nivo/Ipi combo was too toxic at this point. We are doing another trial, which is more toxic so not sure what the thinking behind it is.

                  Good luck to you and keep us posted! Iwill be interested in what you decide to do.

                   

                  pookerpb
                  Participant

                    Prayers to you!!  My husband failed Ipi first, then failed Keytruda with interpheron combo in trial this past 4 months. He was on Ipi for 8 months before progression set in, and them on Keytruda for another 8 when the same thing happened. Our melanoma specialist also told us that the Nivo/Ipi combo was too toxic at this point. We are doing another trial, which is more toxic so not sure what the thinking behind it is.

                    Good luck to you and keep us posted! Iwill be interested in what you decide to do.

                     

                    Squash
                    Participant

                      The doctor says IPI/Nivo combo too toxic for me to handle in my conditon.

                      Squash
                      Participant

                        The doctor says IPI/Nivo combo too toxic for me to handle in my conditon.

                      JuTMSY4
                      Participant

                        Hello – sorry about your position, but fortunately options are ever-expanding.

                        My doc said similar things re: pembro vs. nivo.  Contrary to the media and a few other sources, they are not the same.  Whether that changes biological responses or not is not known.  This thread (from here) supplies lots of information:

                        http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/nivolumab-vs-keytruda

                        One alternative you could consider is a nivo+ipi combo.  That was in trial and I believe was approved in some form (someone more educated than me can explain, most likely).  

                        There's also ACT which has been discussed on here ad nauseum and most likely explained better than I could.  My doc and I discussed this as well, but its a much more disruptive choice than most standard infusions.  

                        Good luck – j

                        JuTMSY4
                        Participant

                          Hello – sorry about your position, but fortunately options are ever-expanding.

                          My doc said similar things re: pembro vs. nivo.  Contrary to the media and a few other sources, they are not the same.  Whether that changes biological responses or not is not known.  This thread (from here) supplies lots of information:

                          http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/nivolumab-vs-keytruda

                          One alternative you could consider is a nivo+ipi combo.  That was in trial and I believe was approved in some form (someone more educated than me can explain, most likely).  

                          There's also ACT which has been discussed on here ad nauseum and most likely explained better than I could.  My doc and I discussed this as well, but its a much more disruptive choice than most standard infusions.  

                          Good luck – j

                          Bubbles
                          Participant

                            Sorry you are dealing with so much. You don't mention your BRAF status, but if you are BRAF positive a BRAF/MEK combo may be a good idea in order to attain some shrinkage and then switch back to immunotherapy or consider surgical options. Yes, pembro and nivo are very similar anti-PD1 products with both having a 40% response rate and work at the same place at the cellular level. However, because of the difference in their chemical make up some folks are looking at trying one then the other if no response is attained on the first. But, it is early days with that so there is little information about how that turns out. Since ipi is the bad boy regarding side effects, in the ipi/nivo combo, but the combo (rather than ipi alone at its 15% response rate) provides a great deal more results…I would personally be pushing hard for the combo…though ultimately only you and your doc fully know and understand your situation and what you can tolerate at this time. I hope you are being seen by a melanoma specialist as you will have more options and they better understand how to deal with side effcts from any immunotherapy should they occur. TIL and IL2 are also treatment options but they can be even more physically punishing than the ipi/nivo combo. There are clinical trials available as well. Perhaps a second opinion on treatment options would be helpful. Yours, celeste

                            Bubbles
                            Participant

                              Sorry you are dealing with so much. You don't mention your BRAF status, but if you are BRAF positive a BRAF/MEK combo may be a good idea in order to attain some shrinkage and then switch back to immunotherapy or consider surgical options. Yes, pembro and nivo are very similar anti-PD1 products with both having a 40% response rate and work at the same place at the cellular level. However, because of the difference in their chemical make up some folks are looking at trying one then the other if no response is attained on the first. But, it is early days with that so there is little information about how that turns out. Since ipi is the bad boy regarding side effects, in the ipi/nivo combo, but the combo (rather than ipi alone at its 15% response rate) provides a great deal more results…I would personally be pushing hard for the combo…though ultimately only you and your doc fully know and understand your situation and what you can tolerate at this time. I hope you are being seen by a melanoma specialist as you will have more options and they better understand how to deal with side effcts from any immunotherapy should they occur. TIL and IL2 are also treatment options but they can be even more physically punishing than the ipi/nivo combo. There are clinical trials available as well. Perhaps a second opinion on treatment options would be helpful. Yours, celeste

                                Mat
                                Participant

                                  I may have responded to your post on MIF.  I agree with Celeste–I would push hard for the ipi-nivo combo.  The fact that your onc is willing to try ipi–but not the combo–is a head scratcher.  Some onc's don't want to deal with the combo because they don't have the staff to address side effects.

                                  Mat
                                  Participant

                                    I may have responded to your post on MIF.  I agree with Celeste–I would push hard for the ipi-nivo combo.  The fact that your onc is willing to try ipi–but not the combo–is a head scratcher.  Some onc's don't want to deal with the combo because they don't have the staff to address side effects.

                                    Mat
                                    Participant

                                      I may have responded to your post on MIF.  I agree with Celeste–I would push hard for the ipi-nivo combo.  The fact that your onc is willing to try ipi–but not the combo–is a head scratcher.  Some onc's don't want to deal with the combo because they don't have the staff to address side effects.

                                    Bubbles
                                    Participant

                                      Sorry you are dealing with so much. You don't mention your BRAF status, but if you are BRAF positive a BRAF/MEK combo may be a good idea in order to attain some shrinkage and then switch back to immunotherapy or consider surgical options. Yes, pembro and nivo are very similar anti-PD1 products with both having a 40% response rate and work at the same place at the cellular level. However, because of the difference in their chemical make up some folks are looking at trying one then the other if no response is attained on the first. But, it is early days with that so there is little information about how that turns out. Since ipi is the bad boy regarding side effects, in the ipi/nivo combo, but the combo (rather than ipi alone at its 15% response rate) provides a great deal more results…I would personally be pushing hard for the combo…though ultimately only you and your doc fully know and understand your situation and what you can tolerate at this time. I hope you are being seen by a melanoma specialist as you will have more options and they better understand how to deal with side effcts from any immunotherapy should they occur. TIL and IL2 are also treatment options but they can be even more physically punishing than the ipi/nivo combo. There are clinical trials available as well. Perhaps a second opinion on treatment options would be helpful. Yours, celeste

                                      Polymath
                                      Participant

                                        Hello,

                                        After failing everything, including Keytruda, It appeared only clinical trials were the only option left.  While in a trial, also a failure, the ipi/nivo combo was FDA approved and became the next viable option.  After all that dissapointment and frustration it appears I have finally responded to something.  Take note I also added radiation treatment which may have increased the effectiveness of immunotherapy.  I am totally in agreement with Mat & Celeste, that dispite what your Doc says (maybe another opinion is in order) that you need to get on the combo and if appropriate, try to get radiation as the additional trigger to get an immune response.  If the side-effects are not manageable, then you may not be able to continue but you won't be second guessing whether you dismissed what may be the very best option available.  Best to you.

                                        Gary

                                         

                                        Polymath
                                        Participant

                                          Hello,

                                          After failing everything, including Keytruda, It appeared only clinical trials were the only option left.  While in a trial, also a failure, the ipi/nivo combo was FDA approved and became the next viable option.  After all that dissapointment and frustration it appears I have finally responded to something.  Take note I also added radiation treatment which may have increased the effectiveness of immunotherapy.  I am totally in agreement with Mat & Celeste, that dispite what your Doc says (maybe another opinion is in order) that you need to get on the combo and if appropriate, try to get radiation as the additional trigger to get an immune response.  If the side-effects are not manageable, then you may not be able to continue but you won't be second guessing whether you dismissed what may be the very best option available.  Best to you.

                                          Gary

                                           

                                          Polymath
                                          Participant

                                            Hello,

                                            After failing everything, including Keytruda, It appeared only clinical trials were the only option left.  While in a trial, also a failure, the ipi/nivo combo was FDA approved and became the next viable option.  After all that dissapointment and frustration it appears I have finally responded to something.  Take note I also added radiation treatment which may have increased the effectiveness of immunotherapy.  I am totally in agreement with Mat & Celeste, that dispite what your Doc says (maybe another opinion is in order) that you need to get on the combo and if appropriate, try to get radiation as the additional trigger to get an immune response.  If the side-effects are not manageable, then you may not be able to continue but you won't be second guessing whether you dismissed what may be the very best option available.  Best to you.

                                            Gary

                                             

                                            BrianP
                                            Participant

                                              I had a consult with Dr. Jedd Wolchok last week.  During our conversation he mentioned they have seen some remarkable responses with chemotherapy for folks who have not responded well to immunotherapy.  We all know that chemo hasn't been a real option for melanoma in the past but he says there seems to be something to using it post immunotherapy treatment.  You probably wouldn't find many oncologist that would give you that answer but I'd just thought I'd throw that information out.

                                              Brian

                                              BrianP
                                              Participant

                                                I had a consult with Dr. Jedd Wolchok last week.  During our conversation he mentioned they have seen some remarkable responses with chemotherapy for folks who have not responded well to immunotherapy.  We all know that chemo hasn't been a real option for melanoma in the past but he says there seems to be something to using it post immunotherapy treatment.  You probably wouldn't find many oncologist that would give you that answer but I'd just thought I'd throw that information out.

                                                Brian

                                                  JuTMSY4
                                                  Participant

                                                    That's an interesting point.  I think one of the next avenues of study, besides combinations of immunotherapy drugs might be the chemo and radiation concepts combined with immunotherapy.  There was a study that showed promise in combining ipi with radiation.  

                                                    http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/

                                                    Certainly, everyone would rather due Nivo/pembro and get a response, but its nice to see that there are a ton of new and combined approaches that reach a greater range.  I have to imagine several years from now they'll have a solid process to achieve good if not great results.  

                                                    JuTMSY4
                                                    Participant

                                                      That's an interesting point.  I think one of the next avenues of study, besides combinations of immunotherapy drugs might be the chemo and radiation concepts combined with immunotherapy.  There was a study that showed promise in combining ipi with radiation.  

                                                      http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/

                                                      Certainly, everyone would rather due Nivo/pembro and get a response, but its nice to see that there are a ton of new and combined approaches that reach a greater range.  I have to imagine several years from now they'll have a solid process to achieve good if not great results.  

                                                      jpg
                                                      Participant

                                                        We will not know the difference between Keytruda and Opdivo until they are run head to head in a clinical trial  Most docs feel they are the same but prefer Keytruda because it is given in lower doses and less often.  If your doc feels the combo of IPI mixed in is too toxic then I wouldn't consider IL2 or TIL trial, both are highly toxic!  Chemo, such as temodar might be worth a shot on top of the keytruda, who knows?  I wish you all the best and that you are pain free.

                                                        jpg
                                                        Participant

                                                          We will not know the difference between Keytruda and Opdivo until they are run head to head in a clinical trial  Most docs feel they are the same but prefer Keytruda because it is given in lower doses and less often.  If your doc feels the combo of IPI mixed in is too toxic then I wouldn't consider IL2 or TIL trial, both are highly toxic!  Chemo, such as temodar might be worth a shot on top of the keytruda, who knows?  I wish you all the best and that you are pain free.

                                                          Squash
                                                          Participant

                                                            Well I think i might still do one more Keytruda because i have felt better after an infusion.

                                                            I think i will do Ipi then.

                                                            I am not convinced Nivo will make a difference based on the fact there isnt any evidence and it works on similar pathways to Keytruda.

                                                            So i think Ipi working on different pathway is a better bet and when you do get a reponse it seems to be quite good.

                                                             

                                                             

                                                             

                                                            Squash
                                                            Participant

                                                              Well I think i might still do one more Keytruda because i have felt better after an infusion.

                                                              I think i will do Ipi then.

                                                              I am not convinced Nivo will make a difference based on the fact there isnt any evidence and it works on similar pathways to Keytruda.

                                                              So i think Ipi working on different pathway is a better bet and when you do get a reponse it seems to be quite good.

                                                               

                                                               

                                                               

                                                              Squash
                                                              Participant

                                                                That is interesting about chemo. However without any direct evidence i would be reluctant to try chemo given side effects.

                                                                Squash
                                                                Participant

                                                                  That is interesting about chemo. However without any direct evidence i would be reluctant to try chemo given side effects.

                                                                  Squash
                                                                  Participant

                                                                    That is interesting about chemo. However without any direct evidence i would be reluctant to try chemo given side effects.

                                                                    Squash
                                                                    Participant

                                                                      Well I think i might still do one more Keytruda because i have felt better after an infusion.

                                                                      I think i will do Ipi then.

                                                                      I am not convinced Nivo will make a difference based on the fact there isnt any evidence and it works on similar pathways to Keytruda.

                                                                      So i think Ipi working on different pathway is a better bet and when you do get a reponse it seems to be quite good.

                                                                       

                                                                       

                                                                       

                                                                      jpg
                                                                      Participant

                                                                        We will not know the difference between Keytruda and Opdivo until they are run head to head in a clinical trial  Most docs feel they are the same but prefer Keytruda because it is given in lower doses and less often.  If your doc feels the combo of IPI mixed in is too toxic then I wouldn't consider IL2 or TIL trial, both are highly toxic!  Chemo, such as temodar might be worth a shot on top of the keytruda, who knows?  I wish you all the best and that you are pain free.

                                                                        JuTMSY4
                                                                        Participant

                                                                          That's an interesting point.  I think one of the next avenues of study, besides combinations of immunotherapy drugs might be the chemo and radiation concepts combined with immunotherapy.  There was a study that showed promise in combining ipi with radiation.  

                                                                          http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/

                                                                          Certainly, everyone would rather due Nivo/pembro and get a response, but its nice to see that there are a ton of new and combined approaches that reach a greater range.  I have to imagine several years from now they'll have a solid process to achieve good if not great results.  

                                                                        BrianP
                                                                        Participant

                                                                          I had a consult with Dr. Jedd Wolchok last week.  During our conversation he mentioned they have seen some remarkable responses with chemotherapy for folks who have not responded well to immunotherapy.  We all know that chemo hasn't been a real option for melanoma in the past but he says there seems to be something to using it post immunotherapy treatment.  You probably wouldn't find many oncologist that would give you that answer but I'd just thought I'd throw that information out.

                                                                          Brian

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