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antiPD-1 scan results

Forums General Melanoma Community antiPD-1 scan results

  • Post
    Ali
    Participant

      So my 12 week scans after starting antiPD-1 were okay.  Only 9% tumor growth.  Some tumors had shrunk, some had grown.  One subcentimeter met had disappeared.  Unfortunately, much of the growth is in an axillary tumor that is starting to give me trouble (the back of my arm is numb, I get a shooting nerve pain with certain movements, and my inner arm is feeling bruised).  It looks like we will have to take care of it sooner than later, and of course we can't radiate or surgically remove it while I'm on the trial.  I am continuing on the trial till it has

      So my 12 week scans after starting antiPD-1 were okay.  Only 9% tumor growth.  Some tumors had shrunk, some had grown.  One subcentimeter met had disappeared.  Unfortunately, much of the growth is in an axillary tumor that is starting to give me trouble (the back of my arm is numb, I get a shooting nerve pain with certain movements, and my inner arm is feeling bruised).  It looks like we will have to take care of it sooner than later, and of course we can't radiate or surgically remove it while I'm on the trial.  I am continuing on the trial till it has to be dealt with (the Dr. says he has seen 2 people have 'late' responses to the drug, which would be a fun group to join).

      So.  I am weighing my options.  One of those is a TIL trial.  So far NIH won't take me for any of theirs, as I have a history of 25 brain mets.  Picky people. 🙂  I actually qualify for one at Moffitt that combines the ACT procedure with a BRAF inhibitor.  I would prefer not to go the BRAF route just yet (I am not anti-BRAF inhibitors, I just feel my immune system has more to give).  I am waiting for a response from Fred Hutchinson and MDAnderson who are recruiting for their TIL trials.  Any where else I should be looking into for that?

      I am not entirely sure that I want to do that next, but I'd like to know if it is an option.  I certainly would love to do it some time.  I am just wondering if I tried IPI again, would it produce great results again?  Especially because I have antiPD-1 in my system now?  Hmmm…. 

      I wondered if anyone has responded to immune therapies after taking the BRAF inhibitors.  Or have you heard of people responding?  The doctor says yes it happens, but I would love to see some examples.

      Thank you for any information/ideas.  Thank you for your good examples of how to gracefully navigate this disease (and beat it altogether!).

      Ali

    Viewing 21 reply threads
    • Replies
        benp
        Participant

          Hi Ali, 

          I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

          All the best, 

          Ben.

          benp
          Participant

            Hi Ali, 

            I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

            All the best, 

            Ben.

            benp
            Participant

              Hi Ali, 

              I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

              All the best, 

              Ben.

              Ali
              Participant

                Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

                Ali

                Phil S
                Participant
                  Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
                  Phil S
                  Participant
                    Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
                    Phil S
                    Participant
                      Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
                      Ali
                      Participant

                        Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

                        Ali

                        G-Samsa
                        Participant
                          Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

                          G-Samsa
                          Participant
                            Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

                              Ali
                              Participant

                                Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

                                Ali

                                Ali
                                Participant

                                  Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

                                  Ali

                                G-Samsa
                                Participant
                                  Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

                                  Ali
                                  Participant

                                    Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

                                    Ali

                                      Ali
                                      Participant

                                        Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

                                        Ali

                                        Ali
                                        Participant

                                          Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

                                          Ali

                                        killmel
                                        Participant

                                          Hi,

                                           

                                          I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

                                          Which PD1 trial and drug company gaveyou permission to radiate your met?

                                           

                                          Thanks for taking the time to repy to my question. Continued success on the trial.

                                           

                                          Andrew

                                          G-Samsa
                                          Participant
                                            I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
                                            killmel
                                            Participant

                                              Thanks G-Samsa,

                                              So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

                                              This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

                                              If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

                                              Thanks,

                                              Andrew

                                              G-Samsa
                                              Participant
                                                Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
                                                  Ali
                                                  Participant

                                                    Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

                                                    Ali

                                                    Ali
                                                    Participant

                                                      Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

                                                      Ali

                                                      killmel
                                                      Participant

                                                        Hi,

                                                         

                                                        I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

                                                        Which PD1 trial and drug company gaveyou permission to radiate your met?

                                                         

                                                        Thanks for taking the time to repy to my question. Continued success on the trial.

                                                         

                                                        Andrew

                                                        killmel
                                                        Participant

                                                          Hi,

                                                           

                                                          I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

                                                          Which PD1 trial and drug company gaveyou permission to radiate your met?

                                                           

                                                          Thanks for taking the time to repy to my question. Continued success on the trial.

                                                           

                                                          Andrew

                                                        aldakota22
                                                        Participant

                                                          In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

                                                          aldakota22
                                                          Participant

                                                            In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

                                                            aldakota22
                                                            Participant

                                                              In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

                                                              BrianP
                                                              Participant

                                                                Ali,

                                                                You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

                                                                http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                                                 

                                                                It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

                                                                Good luck,

                                                                Brian

                                                                BrianP
                                                                Participant

                                                                  Ali,

                                                                  You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

                                                                  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                                                   

                                                                  It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

                                                                  Good luck,

                                                                  Brian

                                                                  BrianP
                                                                  Participant

                                                                    Ali,

                                                                    You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

                                                                    http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                                                     

                                                                    It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

                                                                    Good luck,

                                                                    Brian

                                                                    G-Samsa
                                                                    Participant
                                                                      I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
                                                                      G-Samsa
                                                                      Participant
                                                                        I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
                                                                        killmel
                                                                        Participant

                                                                          Thanks G-Samsa,

                                                                          So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

                                                                          This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

                                                                          If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

                                                                          Thanks,

                                                                          Andrew

                                                                          killmel
                                                                          Participant

                                                                            Thanks G-Samsa,

                                                                            So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

                                                                            This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

                                                                            If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

                                                                            Thanks,

                                                                            Andrew

                                                                            G-Samsa
                                                                            Participant
                                                                              Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
                                                                              G-Samsa
                                                                              Participant
                                                                                Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
                                                                            Viewing 21 reply threads
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