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Yervoy ADDED to Zelboraf plus radiation?

Forums General Melanoma Community Yervoy ADDED to Zelboraf plus radiation?

  • Post
    fdess056
    Participant

      Hi all.  I completed Yervoy last spring and have been on Zelboraf for 7 months.  I was just refused entry into a PD-1 trial at Sloane due to brain mets which Bristol Myers Squibb claims are active.  My docs and radiation consultants disagree but I guess the drug companies get to make that decision. other mets in my stomach and knee seem to be showing some indication that my body may be building up a resistance to the Zel.

      Hi all.  I completed Yervoy last spring and have been on Zelboraf for 7 months.  I was just refused entry into a PD-1 trial at Sloane due to brain mets which Bristol Myers Squibb claims are active.  My docs and radiation consultants disagree but I guess the drug companies get to make that decision. other mets in my stomach and knee seem to be showing some indication that my body may be building up a resistance to the Zel.

      Anyway, my onc now wants to continue with the zelboraf, re-introduce yervoy along with it and also add some radiation.  Anyone have any experience with this?  I've tried to do some research but couldn't come up with much.  Any help would be greatly appreciated.

      Thanks

      FrankD-Brooklyn

    Viewing 5 reply threads
    • Replies
        pipes
        Participant

          My husband has been taking Zelboraf and Yervoy together for about 18 months now.  He gets the Yervoy every 12 weeks and currently takes Zelboraf 2 pills twice a day, he was on three pills twice a day but choose to decrease to help with side effects.  He has been NED for 15 months.  He has scan on Monday to see how he is doing.  Side effects of the two combine can be rough.  Some days he feels drain and has little energy but other days he feel sbetter.  He can get very itchy after the Yervoy along with some nausea and dizziness.   About 10 days after infusion he gets IV fluids to help with nausea and dizziness which seems to help.  His labs have been good with the combination but I knw they were having problem swith the clincal trial with liver labs being off and causing some issues.  My husband has not had any brain mets and has not had radiation.

            fdess056
            Participant

              Thanks for the response.  I am completing my final dose of vervoy on 5/8 and have remained on full dose zelboraf (960 mg twice a day)..  I am also steroids.  Knee met did grow and had to be romoved.  Radiation starts this Thurs.    Unfortuanely,during knee surgery, brain mets seem to have grown and are affecting my vivion.  I willl be re=evaluated this Wed by the Brain Tumor team.   I have some heafdaches and a lot of weakness but am hanging intgere. Best of luck to  you and your husband

              FranD Brooklyn

              fdess056
              Participant

                Thanks for the response.  I am completing my final dose of vervoy on 5/8 and have remained on full dose zelboraf (960 mg twice a day)..  I am also steroids.  Knee met did grow and had to be romoved.  Radiation starts this Thurs.    Unfortuanely,during knee surgery, brain mets seem to have grown and are affecting my vivion.  I willl be re=evaluated this Wed by the Brain Tumor team.   I have some heafdaches and a lot of weakness but am hanging intgere. Best of luck to  you and your husband

                FranD Brooklyn

                fdess056
                Participant

                  Thanks for the response.  I am completing my final dose of vervoy on 5/8 and have remained on full dose zelboraf (960 mg twice a day)..  I am also steroids.  Knee met did grow and had to be romoved.  Radiation starts this Thurs.    Unfortuanely,during knee surgery, brain mets seem to have grown and are affecting my vivion.  I willl be re=evaluated this Wed by the Brain Tumor team.   I have some heafdaches and a lot of weakness but am hanging intgere. Best of luck to  you and your husband

                  FranD Brooklyn

                pipes
                Participant

                  My husband has been taking Zelboraf and Yervoy together for about 18 months now.  He gets the Yervoy every 12 weeks and currently takes Zelboraf 2 pills twice a day, he was on three pills twice a day but choose to decrease to help with side effects.  He has been NED for 15 months.  He has scan on Monday to see how he is doing.  Side effects of the two combine can be rough.  Some days he feels drain and has little energy but other days he feel sbetter.  He can get very itchy after the Yervoy along with some nausea and dizziness.   About 10 days after infusion he gets IV fluids to help with nausea and dizziness which seems to help.  His labs have been good with the combination but I knw they were having problem swith the clincal trial with liver labs being off and causing some issues.  My husband has not had any brain mets and has not had radiation.

                  pipes
                  Participant

                    My husband has been taking Zelboraf and Yervoy together for about 18 months now.  He gets the Yervoy every 12 weeks and currently takes Zelboraf 2 pills twice a day, he was on three pills twice a day but choose to decrease to help with side effects.  He has been NED for 15 months.  He has scan on Monday to see how he is doing.  Side effects of the two combine can be rough.  Some days he feels drain and has little energy but other days he feel sbetter.  He can get very itchy after the Yervoy along with some nausea and dizziness.   About 10 days after infusion he gets IV fluids to help with nausea and dizziness which seems to help.  His labs have been good with the combination but I knw they were having problem swith the clincal trial with liver labs being off and causing some issues.  My husband has not had any brain mets and has not had radiation.

                    kylez
                    Participant

                      Frank, I can't answer the quetion you've posed, because I have had IPI once, never Zel, never re-introduced IPI. Have had Gamma and Cyber Knife to brain.

                      But, the following would be a different question — have you looked into either of the Merck MK-3475 trials? (another anti-PD1 drug) Phase I and Phase II.  Maybe they'd have a different take than BMS on how to judge brain mets as stable.

                      See this posting on the MIF site: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105
                      You can directly email Catherine Poole there as the posting states. She's keeping track (with patients, clinicians, pharma, advocates, etc.) of a list of sites actually offering this trial and likely has some of the most up-to-date info there is. From the less up-to-date clinicaltrials.gov, the phase II trial has a location in Hackensack NJ. While there's a chemo arm in the phase II trial, I believe there's a crossover if there's progression for those on the chemo arm. 

                      You might want to post this on the main Forum here at MPIP, as this is the off-topic forum.

                      Hoping you get a plan in place that you're comfortable with. – Kyle

                      kylez
                      Participant

                        Frank, I can't answer the quetion you've posed, because I have had IPI once, never Zel, never re-introduced IPI. Have had Gamma and Cyber Knife to brain.

                        But, the following would be a different question — have you looked into either of the Merck MK-3475 trials? (another anti-PD1 drug) Phase I and Phase II.  Maybe they'd have a different take than BMS on how to judge brain mets as stable.

                        See this posting on the MIF site: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105
                        You can directly email Catherine Poole there as the posting states. She's keeping track (with patients, clinicians, pharma, advocates, etc.) of a list of sites actually offering this trial and likely has some of the most up-to-date info there is. From the less up-to-date clinicaltrials.gov, the phase II trial has a location in Hackensack NJ. While there's a chemo arm in the phase II trial, I believe there's a crossover if there's progression for those on the chemo arm. 

                        You might want to post this on the main Forum here at MPIP, as this is the off-topic forum.

                        Hoping you get a plan in place that you're comfortable with. – Kyle

                        kylez
                        Participant

                          Frank, I can't answer the quetion you've posed, because I have had IPI once, never Zel, never re-introduced IPI. Have had Gamma and Cyber Knife to brain.

                          But, the following would be a different question — have you looked into either of the Merck MK-3475 trials? (another anti-PD1 drug) Phase I and Phase II.  Maybe they'd have a different take than BMS on how to judge brain mets as stable.

                          See this posting on the MIF site: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105
                          You can directly email Catherine Poole there as the posting states. She's keeping track (with patients, clinicians, pharma, advocates, etc.) of a list of sites actually offering this trial and likely has some of the most up-to-date info there is. From the less up-to-date clinicaltrials.gov, the phase II trial has a location in Hackensack NJ. While there's a chemo arm in the phase II trial, I believe there's a crossover if there's progression for those on the chemo arm. 

                          You might want to post this on the main Forum here at MPIP, as this is the off-topic forum.

                          Hoping you get a plan in place that you're comfortable with. – Kyle

                      Viewing 5 reply threads
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