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Scan results after Ipi + IL2 Trial

Forums General Melanoma Community Scan results after Ipi + IL2 Trial

  • Post
    JoshF
    Participant

      It's been a long road since I was desperately posting in Aug/Sept. For those of you who have been following I opted to do Promtheus Labs Trial/Study of ipi + IL2 randomized combo after recurrence in rt cheek and ultimately mets to lungs. Went through 4 doses of ipi…side effects were itchyskin/rash & hypothyroid which we're still trying to get under control. Then did 2 rounds of IL2…took 11 of 12 bags each time…rough treatment but I was well prepared after hearing from some of you notably Jerry from Fauq and Rebecca & Bob. I've been out of hospital 3 weeks now…feeling pretty good.

      I had Pet scan Monday and received results  yesterday. Lung nodules gone…NED!!! I was shocked and relieved. There was mild uptake in rt cheek but doc said this is consistent with scarring/healing. Still makes me nervous…that's where it all started…and I had surgery in September. That sound right? I get aggravated with myself because this is news we all want to hear and though I'm happy…seems like I can never fully accept it. 

      I'm pulling and praying for all of you out there…this is one tricky disease. I know there's some promising treatments on horizon and my wish for 2014 is that they continue to come to fruition and benefit all of you courageous warriors.

      Best

      Josh

    Viewing 41 reply threads
    • Replies
        GAngel
        Participant

          Wonderful news Josh!  What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.

          Gina

          GAngel
          Participant

            Wonderful news Josh!  What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.

            Gina

            GAngel
            Participant

              Wonderful news Josh!  What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.

              Gina

              Mat
              Participant

                Josh, congratulations!  Great news!

                Mat
                Participant

                  Josh, congratulations!  Great news!

                  Mat
                  Participant

                    Josh, congratulations!  Great news!

                    Jewel
                    Participant

                      Fantastic News!!! May it be for forever!!

                       

                      Jewel

                      Jewel
                      Participant

                        Fantastic News!!! May it be for forever!!

                         

                        Jewel

                        Jewel
                        Participant

                          Fantastic News!!! May it be for forever!!

                           

                          Jewel

                          jim Breitfeller
                          Participant

                            Josh,

                            congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.

                            jimmy b

                              JoshF
                              Participant

                                Jim-

                                I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.

                                Can you share what you've done in regards to diet? Also any advice on trick of staying NED? πŸ˜‰

                                Josh

                                JoshF
                                Participant

                                  Jim-

                                  I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.

                                  Can you share what you've done in regards to diet? Also any advice on trick of staying NED? πŸ˜‰

                                  Josh

                                  JoshF
                                  Participant

                                    Jim-

                                    I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.

                                    Can you share what you've done in regards to diet? Also any advice on trick of staying NED? πŸ˜‰

                                    Josh

                                  jim Breitfeller
                                  Participant

                                    Josh,

                                    congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.

                                    jimmy b

                                    jim Breitfeller
                                    Participant

                                      Josh,

                                      congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.

                                      jimmy b

                                      Bubbles
                                      Participant

                                        That's wonderful, Josh!!!  I really do understand what you mean.  Try to recover and enjoy!!  I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy.  Yours, C

                                        Bubbles
                                        Participant

                                          That's wonderful, Josh!!!  I really do understand what you mean.  Try to recover and enjoy!!  I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy.  Yours, C

                                          Bubbles
                                          Participant

                                            That's wonderful, Josh!!!  I really do understand what you mean.  Try to recover and enjoy!!  I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy.  Yours, C

                                            SABKLYN
                                            Participant

                                              Awesome news Josh!   

                                              SABKLYN
                                              Participant

                                                Awesome news Josh!   

                                                SABKLYN
                                                Participant

                                                  Awesome news Josh!   

                                                  POW
                                                  Participant

                                                    That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!

                                                    I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma. 

                                                    With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?

                                                     

                                                      Brendan
                                                      Participant

                                                        Great news, Josh.  Thanks for posting.

                                                        Brendan

                                                        Brendan
                                                        Participant

                                                          Great news, Josh.  Thanks for posting.

                                                          Brendan

                                                          Brendan
                                                          Participant

                                                            Great news, Josh.  Thanks for posting.

                                                            Brendan

                                                          POW
                                                          Participant

                                                            That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!

                                                            I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma. 

                                                            With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?

                                                             

                                                            POW
                                                            Participant

                                                              That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!

                                                              I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma. 

                                                              With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?

                                                               

                                                              kpcollins31
                                                              Participant

                                                                Congratulations, Josh – Great news!

                                                                Kevin

                                                                kpcollins31
                                                                Participant

                                                                  Congratulations, Josh – Great news!

                                                                  Kevin

                                                                  kpcollins31
                                                                  Participant

                                                                    Congratulations, Josh – Great news!

                                                                    Kevin

                                                                      sofistef
                                                                      Participant

                                                                        Thanks for posting the great news, Congratulations!! Wishing you continuous NED!

                                                                        sofistef
                                                                        Participant

                                                                          Thanks for posting the great news, Congratulations!! Wishing you continuous NED!

                                                                          sofistef
                                                                          Participant

                                                                            Thanks for posting the great news, Congratulations!! Wishing you continuous NED!

                                                                            tschmith
                                                                            Participant

                                                                              Congratulations, Josh!  NED is such good news!

                                                                               

                                                                              tschmith
                                                                              Participant

                                                                                Congratulations, Josh!  NED is such good news!

                                                                                 

                                                                                tschmith
                                                                                Participant

                                                                                  Congratulations, Josh!  NED is such good news!

                                                                                   

                                                                                JerryfromFauq
                                                                                Participant

                                                                                  Josh, I suspect you have some idea as to how happy I am for your results.  Suspect you are even more happy!  I would expect there to be SUV uptake where the original operation/removal occured.  ALL my operations/tissue injuries show on all my scans .  Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!

                                                                                   

                                                                                  JerryfromFauq
                                                                                  Participant

                                                                                    Josh, I suspect you have some idea as to how happy I am for your results.  Suspect you are even more happy!  I would expect there to be SUV uptake where the original operation/removal occured.  ALL my operations/tissue injuries show on all my scans .  Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!

                                                                                     

                                                                                    JerryfromFauq
                                                                                    Participant

                                                                                      Josh, I suspect you have some idea as to how happy I am for your results.  Suspect you are even more happy!  I would expect there to be SUV uptake where the original operation/removal occured.  ALL my operations/tissue injuries show on all my scans .  Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!

                                                                                       

                                                                                      BrianP
                                                                                      Participant

                                                                                        Wonderful news Josh.  Thanks for sharing.  Enjoy your NED status. 

                                                                                        Brian

                                                                                        BrianP
                                                                                        Participant

                                                                                          Wonderful news Josh.  Thanks for sharing.  Enjoy your NED status. 

                                                                                          Brian

                                                                                          BrianP
                                                                                          Participant

                                                                                            Wonderful news Josh.  Thanks for sharing.  Enjoy your NED status. 

                                                                                            Brian

                                                                                            Jahendry12
                                                                                            Participant

                                                                                              That's fantastic!!!!!  I was hoping and praying we were going to hear good news from you!  So happy for you! 

                                                                                              Remember to celebrate these milestones πŸ™‚

                                                                                              Julie

                                                                                              Jahendry12
                                                                                              Participant

                                                                                                That's fantastic!!!!!  I was hoping and praying we were going to hear good news from you!  So happy for you! 

                                                                                                Remember to celebrate these milestones πŸ™‚

                                                                                                Julie

                                                                                                Jahendry12
                                                                                                Participant

                                                                                                  That's fantastic!!!!!  I was hoping and praying we were going to hear good news from you!  So happy for you! 

                                                                                                  Remember to celebrate these milestones πŸ™‚

                                                                                                  Julie

                                                                                                  eric w
                                                                                                  Participant

                                                                                                    Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks

                                                                                                    eric w
                                                                                                    Participant

                                                                                                      Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks

                                                                                                      eric w
                                                                                                      Participant

                                                                                                        Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks

                                                                                                        nancyg
                                                                                                        Participant

                                                                                                          So so happy to hear!!!  

                                                                                                          nancyg
                                                                                                          Participant

                                                                                                            So so happy to hear!!!  

                                                                                                            nancyg
                                                                                                            Participant

                                                                                                              So so happy to hear!!!  

                                                                                                                NYKaren
                                                                                                                Participant

                                                                                                                  Josh,

                                                                                                                  i am just thrilled at your news. 

                                                                                                                  Karen

                                                                                                                  NYKaren
                                                                                                                  Participant

                                                                                                                    Josh,

                                                                                                                    i am just thrilled at your news. 

                                                                                                                    Karen

                                                                                                                    NYKaren
                                                                                                                    Participant

                                                                                                                      Josh,

                                                                                                                      i am just thrilled at your news. 

                                                                                                                      Karen

                                                                                                                    eric w
                                                                                                                    Participant

                                                                                                                      Hey Josh,

                                                                                                                       

                                                                                                                      How long did you wait from your last dose of ipi to induction of IL-2? Thanks

                                                                                                                      eric w
                                                                                                                      Participant

                                                                                                                        Hey Josh,

                                                                                                                         

                                                                                                                        How long did you wait from your last dose of ipi to induction of IL-2? Thanks

                                                                                                                        eric w
                                                                                                                        Participant

                                                                                                                          Hey Josh,

                                                                                                                           

                                                                                                                          How long did you wait from your last dose of ipi to induction of IL-2? Thanks

                                                                                                                            JoshF
                                                                                                                            Participant

                                                                                                                              About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good

                                                                                                                              JoshF
                                                                                                                              Participant

                                                                                                                                About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good

                                                                                                                                JoshF
                                                                                                                                Participant

                                                                                                                                  About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good

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