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Anyone taking dabrafenib/trametinib after nivo/ippi
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Anyone taking dabrafenib/trametinib after nivo/ippi

› Forums › General Melanoma Community › Anyone taking dabrafenib/trametinib after nivo/ippi

  • Post
    • December 1, 2015 at 8:53 pm
    sayres
    Participant
      Diagnosed with stage 4 metastic melanoma in lings, liver, and lymph nodes July of 2015. I was started on the trial of Nivo and Ippi. My CT in November showed no change, my tumors were not responding to the immunotherapy.

      I’m very depressed over this after seeing such good results for most stage 4 patients. I guess I’m part of the 50% who don’t respond to the treatment. I did get very sick with rash and colitis. My liver enzymes went crazy and I had to go on steroids after 3 treatments.

      Since there was no change my physician determined that we had to go a new route. I am now taking a combination of 2 types of chemo pills. Dabrafenib and trametinib.

      Anyone have any experience with this? I’m looking for some hope here. I’ve heard these only work for a year and your body becomes immune and the tumors grow again.

      Thanks…

    Viewing 8 reply threads
    • Replies
        • December 1, 2015 at 9:13 pm
        arthurjedi007
        Participant

          Wow. I've never heard of someone not responding to that combo. I've done them separate with no response to ipi and some to pd1 via keytruda and later nivo.

          I did those chemo pills for about 10 weeks. Most of my tumors stopped growing. But nothing shrank. Also some continued to grow like crazy and a new one showed up. About 9 months later I found thst new one was braf wild type.

          So if you are lucky enough thst all your tumors are the braf and are very lucky then you can be like some people who are on them for years and even get Ned. Most people though they work about a year like you say. In that time though you can hopefully find something better.

          Artie

          • December 1, 2015 at 9:13 pm
          arthurjedi007
          Participant

            Wow. I've never heard of someone not responding to that combo. I've done them separate with no response to ipi and some to pd1 via keytruda and later nivo.

            I did those chemo pills for about 10 weeks. Most of my tumors stopped growing. But nothing shrank. Also some continued to grow like crazy and a new one showed up. About 9 months later I found thst new one was braf wild type.

            So if you are lucky enough thst all your tumors are the braf and are very lucky then you can be like some people who are on them for years and even get Ned. Most people though they work about a year like you say. In that time though you can hopefully find something better.

            Artie

              • December 1, 2015 at 9:18 pm
              sayres
              Participant
                Thanks for the reply Artie. I was surprised myself at the zero change. My family is urging me to seek treatment at the Cancer Center of America in Chicago. I’m currently going to University of Michigan, Ann Arbor, which is excellent as well. I’m just wondering if there are some other options out there for me.
                • December 1, 2015 at 9:18 pm
                sayres
                Participant
                  Thanks for the reply Artie. I was surprised myself at the zero change. My family is urging me to seek treatment at the Cancer Center of America in Chicago. I’m currently going to University of Michigan, Ann Arbor, which is excellent as well. I’m just wondering if there are some other options out there for me.
                  • December 1, 2015 at 9:18 pm
                  sayres
                  Participant
                    Thanks for the reply Artie. I was surprised myself at the zero change. My family is urging me to seek treatment at the Cancer Center of America in Chicago. I’m currently going to University of Michigan, Ann Arbor, which is excellent as well. I’m just wondering if there are some other options out there for me.
                    • December 2, 2015 at 9:06 am
                    lmhl
                    Participant

                      Artie…I am new to this and trying to figure all of this out. If one was braf neg and not responding to ipi what would the next step be?  When you say "lucky enough" that the tumors are the braf-does that mean braf positive? Are there better treatments for someone who is braf positive?

                      Stage 3 /braf neg/localized reoccurence following CLND/radiation/starting ipi next week

                      • December 2, 2015 at 9:06 am
                      lmhl
                      Participant

                        Artie…I am new to this and trying to figure all of this out. If one was braf neg and not responding to ipi what would the next step be?  When you say "lucky enough" that the tumors are the braf-does that mean braf positive? Are there better treatments for someone who is braf positive?

                        Stage 3 /braf neg/localized reoccurence following CLND/radiation/starting ipi next week

                        • December 2, 2015 at 9:06 am
                        lmhl
                        Participant

                          Artie…I am new to this and trying to figure all of this out. If one was braf neg and not responding to ipi what would the next step be?  When you say "lucky enough" that the tumors are the braf-does that mean braf positive? Are there better treatments for someone who is braf positive?

                          Stage 3 /braf neg/localized reoccurence following CLND/radiation/starting ipi next week

                          • December 2, 2015 at 2:27 pm
                          arthurjedi007
                          Participant

                            The post right before yours by mdoh has a link about dr Allison in Houston. He mentioned a trial that included a braf med they got an almost 100% response rate. That seems fantastic to me. So yes if a person is braf positive they have more meds available to try.

                            Artie

                             

                            • December 2, 2015 at 2:27 pm
                            arthurjedi007
                            Participant

                              The post right before yours by mdoh has a link about dr Allison in Houston. He mentioned a trial that included a braf med they got an almost 100% response rate. That seems fantastic to me. So yes if a person is braf positive they have more meds available to try.

                              Artie

                               

                              • December 2, 2015 at 2:27 pm
                              arthurjedi007
                              Participant

                                The post right before yours by mdoh has a link about dr Allison in Houston. He mentioned a trial that included a braf med they got an almost 100% response rate. That seems fantastic to me. So yes if a person is braf positive they have more meds available to try.

                                Artie

                                 

                              • December 1, 2015 at 9:13 pm
                              arthurjedi007
                              Participant

                                Wow. I've never heard of someone not responding to that combo. I've done them separate with no response to ipi and some to pd1 via keytruda and later nivo.

                                I did those chemo pills for about 10 weeks. Most of my tumors stopped growing. But nothing shrank. Also some continued to grow like crazy and a new one showed up. About 9 months later I found thst new one was braf wild type.

                                So if you are lucky enough thst all your tumors are the braf and are very lucky then you can be like some people who are on them for years and even get Ned. Most people though they work about a year like you say. In that time though you can hopefully find something better.

                                Artie

                                • December 1, 2015 at 10:31 pm
                                gregor913
                                Participant

                                  Have you asked your doctor about surgery. Microwave ablation or vats surgery. Hope those new treatments kick that cancers ass.

                                    • December 2, 2015 at 3:31 am
                                    sayres
                                    Participant
                                      No I haven’t. I will check into that to see if it’s an option. I was told at the beginning that surgery was not an option for me. Thanks.
                                      • December 2, 2015 at 3:31 am
                                      sayres
                                      Participant
                                        No I haven’t. I will check into that to see if it’s an option. I was told at the beginning that surgery was not an option for me. Thanks.
                                        • December 2, 2015 at 3:31 am
                                        sayres
                                        Participant
                                          No I haven’t. I will check into that to see if it’s an option. I was told at the beginning that surgery was not an option for me. Thanks.
                                        • December 1, 2015 at 10:31 pm
                                        gregor913
                                        Participant

                                          Have you asked your doctor about surgery. Microwave ablation or vats surgery. Hope those new treatments kick that cancers ass.

                                          • December 1, 2015 at 10:31 pm
                                          gregor913
                                          Participant

                                            Have you asked your doctor about surgery. Microwave ablation or vats surgery. Hope those new treatments kick that cancers ass.

                                            • December 2, 2015 at 1:43 pm
                                            Gwenmorgan
                                            Participant

                                              Once I complete the ipi/nivo in January our plan is to go back on BRAF.  The BRAF was doing well for me on lung mets and other areas – but not so great in the brain.  I do not know if I am responding to ipi/nivo or not – this was just the overall plan as discussed.  I am happy to continue some sort of treatment after this – I don't want to go back into the freefall of "innumerable."

                                              • December 2, 2015 at 1:43 pm
                                              Gwenmorgan
                                              Participant

                                                Once I complete the ipi/nivo in January our plan is to go back on BRAF.  The BRAF was doing well for me on lung mets and other areas – but not so great in the brain.  I do not know if I am responding to ipi/nivo or not – this was just the overall plan as discussed.  I am happy to continue some sort of treatment after this – I don't want to go back into the freefall of "innumerable."

                                                  • December 2, 2015 at 5:26 pm
                                                  sayres
                                                  Participant
                                                    Good luck to you! I pray for good results…please update when you can. Kick butt!
                                                    • December 2, 2015 at 5:26 pm
                                                    sayres
                                                    Participant
                                                      Good luck to you! I pray for good results…please update when you can. Kick butt!
                                                      • December 2, 2015 at 5:26 pm
                                                      sayres
                                                      Participant
                                                        Good luck to you! I pray for good results…please update when you can. Kick butt!
                                                      • December 2, 2015 at 1:43 pm
                                                      Gwenmorgan
                                                      Participant

                                                        Once I complete the ipi/nivo in January our plan is to go back on BRAF.  The BRAF was doing well for me on lung mets and other areas – but not so great in the brain.  I do not know if I am responding to ipi/nivo or not – this was just the overall plan as discussed.  I am happy to continue some sort of treatment after this – I don't want to go back into the freefall of "innumerable."

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