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JohnA

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      JohnA
      Participant

        Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

        we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

        her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

        She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

        With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

        JohnA
        Participant

          Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

          we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

          her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

          She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

          With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

          JohnA
          Participant

            Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.

            we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.

            her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?

            She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.

            With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…

            JohnA
            Participant

              Our oncologist only agreed to work with us if we understand that all medical care for my wife would be run by him first. She gets a cold, they want to know. They ask her to check in regularly by calling the office.  I don't know how they manage it, honestly.  But, I'm just saying this b/c that standard of care is out there.  I think you're in the DC area – if so, if I were you I'd drive over to Hopkins and see Dr. Sharfman.

              JohnA
              Participant

                We had a great experience with Dr. Bill Sharfman at Hopkins.  Very knowledgable, kind and responsive.

                Also, if you're willing to travel to Sloan, Paul Chapman is fantastic. The initial clinical trials for combo therapy were generated there. Or, a little further for you, Dr. Hodi at Dana Farber who has also fostered clinical trials. 

                We have really benefitted from being at a place working with a doc who has run lots of patients through immunotherapy protocols as part of the Keynote and other trials, since we belive it's the clinical judgement that has truly made a difference in my wife's care.  We asked how many patients the doc has treated with the therapy recommended for my wife and found people whose judgement we really respected.

                 

                JohnA
                Participant

                  Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                   

                  JohnA
                  Participant

                    Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                     

                    JohnA
                    Participant

                      Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                       

                      JohnA
                      Participant

                        Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                         

                        JohnA
                        Participant

                          Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                           

                          JohnA
                          Participant

                            Thanks Celeste – I guess what I am asking is are we to assume that the combo is also inferior to a pd-1 alone?

                             

                            JohnA
                            Participant

                              Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

                              JohnA
                              Participant

                                Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

                                JohnA
                                Participant

                                  Gamma knife is a type of srs, yes. Srs is stereotactic radiosurgery.  

                                  JohnA
                                  Participant

                                    Thanks Kyle – we just met the radiation onc and they will use a mask here instead of a frame. Not user if we should be concerned about that or not.

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