Scan results- Now both feet in stage 4

› Forums › General Melanoma Community › Scan results- Now both feet in stage 4

  • Post
    • August 23, 2016 at 1:47 pm
    Julie in SoCal
    Participant

      Dear Friends,

      For the last year and a half or so, I've felt like I'm living with my toes over the edge of Stage 3c; one foot in and one foot out of stage 4.  I've had so many small possibly benign things pop up.  As of yesterday's scans, though I'm now both feet in stage 4 as a 13 x 19 mm hotspot was found in my left lung.  I also had another small intransit pop up.  So it seems Pembro is going the way of IPI, only working for so long and then slowly failing.

      So what's the plan? The tumor is small, and doesn't seem to be rapidly growing so I have time to research and find a plan that I'm comfortable with. Also, surgery is an option.  The met is in a very resectable place and is not yet big.  Clinical trials are also an option. Rock Star doc has also given me 2 clinical trials to look at: one targeting NY-ESO-1 (ID-LV305-2013-1) and the other targeting JAC-1 (INCB39110-107).

      My instincts (and past plan) has been to leave tumors where they are and attack them with something systematic.  My thinking was that once Mel has left the building and traveled all around my body via blood and lymph systems, only a systematic treatment will work.  And Surgery's always an option I can keep in my back pocket.  

      So this is how it is.  Is anyone on the NY-ESO or JAC-1 trials?  Has anyone else failed IPI and PD-1 and joined a clinical trial? Which one did you do?  Looking for all advice and options.

      I'm grateful for this community and for the support, knowledge and wisdom they share. Thanks, friends.

      Shalom,

      Julie

    Viewing 17 reply threads
    • Replies
        • August 23, 2016 at 2:07 pm
        BrianP
        Participant

          Shoot Julie.  Sorry those scan results weren't what we were hoping. 

          UCLA seems to be doing some cool things.  If you google IRB#: 12-000153 the trial sounds like the NY-ESO-1 TCR trial you were talking about.  Also IRB#: 08-02-020,10-001212 sounds similar to the trial Josh is doing at MDA but with a different twist.  They also have this trial:

          https://clinicaltrials.gov/ct2/show/NCT02535078?term=02535078&rank=1

          I talked to Duke Cancer Center about that trial yesterday.  The trial has a few arms where they are trying different combinations of a anti CTLA-4 and a anti PD-L1 with IMCGP 100.  It may not be as appealing to you since you have tried a anti CTLA-4 and anti PD-1 but the IMCGP 100 addition does seem promising.  Here's a little press release on what it does:

          http://www.immunocore.com/news/2016/06/immunocore-presents-positive-imcgp100-phase-i-data-at-the-2016-asco-annual-meeting

          Best of luck to you.

          Brian

           

          • August 23, 2016 at 2:07 pm
          BrianP
          Participant

            Shoot Julie.  Sorry those scan results weren't what we were hoping. 

            UCLA seems to be doing some cool things.  If you google IRB#: 12-000153 the trial sounds like the NY-ESO-1 TCR trial you were talking about.  Also IRB#: 08-02-020,10-001212 sounds similar to the trial Josh is doing at MDA but with a different twist.  They also have this trial:

            https://clinicaltrials.gov/ct2/show/NCT02535078?term=02535078&rank=1

            I talked to Duke Cancer Center about that trial yesterday.  The trial has a few arms where they are trying different combinations of a anti CTLA-4 and a anti PD-L1 with IMCGP 100.  It may not be as appealing to you since you have tried a anti CTLA-4 and anti PD-1 but the IMCGP 100 addition does seem promising.  Here's a little press release on what it does:

            http://www.immunocore.com/news/2016/06/immunocore-presents-positive-imcgp100-phase-i-data-at-the-2016-asco-annual-meeting

            Best of luck to you.

            Brian

             

            • August 23, 2016 at 2:07 pm
            BrianP
            Participant

              Shoot Julie.  Sorry those scan results weren't what we were hoping. 

              UCLA seems to be doing some cool things.  If you google IRB#: 12-000153 the trial sounds like the NY-ESO-1 TCR trial you were talking about.  Also IRB#: 08-02-020,10-001212 sounds similar to the trial Josh is doing at MDA but with a different twist.  They also have this trial:

              https://clinicaltrials.gov/ct2/show/NCT02535078?term=02535078&rank=1

              I talked to Duke Cancer Center about that trial yesterday.  The trial has a few arms where they are trying different combinations of a anti CTLA-4 and a anti PD-L1 with IMCGP 100.  It may not be as appealing to you since you have tried a anti CTLA-4 and anti PD-1 but the IMCGP 100 addition does seem promising.  Here's a little press release on what it does:

              http://www.immunocore.com/news/2016/06/immunocore-presents-positive-imcgp100-phase-i-data-at-the-2016-asco-annual-meeting

              Best of luck to you.

              Brian

               

              • August 23, 2016 at 2:48 pm
              debwray
              Participant

                Hi Julie,

                Sorry to hear your news. Can't add anything practical-sorry. Just chiming in with what other have said as I'm pretty much laid up at the moment and have the time to look at what is happening on the board. Looks like you have options – which is a small consolation.Thank you for letting us share your story. Just got the appointment for my next CT scan today……

                Shalom,

                Deb

                Hoping to stay stage III but learning from the journeys of others

                • August 23, 2016 at 2:48 pm
                debwray
                Participant

                  Hi Julie,

                  Sorry to hear your news. Can't add anything practical-sorry. Just chiming in with what other have said as I'm pretty much laid up at the moment and have the time to look at what is happening on the board. Looks like you have options – which is a small consolation.Thank you for letting us share your story. Just got the appointment for my next CT scan today……

                  Shalom,

                  Deb

                  Hoping to stay stage III but learning from the journeys of others

                  • August 23, 2016 at 2:48 pm
                  debwray
                  Participant

                    Hi Julie,

                    Sorry to hear your news. Can't add anything practical-sorry. Just chiming in with what other have said as I'm pretty much laid up at the moment and have the time to look at what is happening on the board. Looks like you have options – which is a small consolation.Thank you for letting us share your story. Just got the appointment for my next CT scan today……

                    Shalom,

                    Deb

                    Hoping to stay stage III but learning from the journeys of others

                    • August 23, 2016 at 2:55 pm
                    Bubbles
                    Participant

                      Oh, Julie!!  I'm sorry!  Shoot!!!

                      I don't have any personal data to share pertinent to your question…but I do have this abstract and info on JAK inhibitors specifically after one has progressed on immunotherapy with a trial that last I looked was still enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/study-working-to-determine-key.html

                      And this is a list of trials I put together in May for Josh to consider and includes an IDO inhibitor trial, the JAK inhibitor, and epocadastat with a vaccine:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                      For what it's worth.  Hang in there.  Celeste

                       

                      • August 23, 2016 at 2:55 pm
                      Bubbles
                      Participant

                        Oh, Julie!!  I'm sorry!  Shoot!!!

                        I don't have any personal data to share pertinent to your question…but I do have this abstract and info on JAK inhibitors specifically after one has progressed on immunotherapy with a trial that last I looked was still enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/study-working-to-determine-key.html

                        And this is a list of trials I put together in May for Josh to consider and includes an IDO inhibitor trial, the JAK inhibitor, and epocadastat with a vaccine:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                        For what it's worth.  Hang in there.  Celeste

                         

                        • August 23, 2016 at 2:55 pm
                        Bubbles
                        Participant

                          Oh, Julie!!  I'm sorry!  Shoot!!!

                          I don't have any personal data to share pertinent to your question…but I do have this abstract and info on JAK inhibitors specifically after one has progressed on immunotherapy with a trial that last I looked was still enrolling:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/study-working-to-determine-key.html

                          And this is a list of trials I put together in May for Josh to consider and includes an IDO inhibitor trial, the JAK inhibitor, and epocadastat with a vaccine:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                          For what it's worth.  Hang in there.  Celeste

                           

                          • August 23, 2016 at 7:59 pm
                          ed williams
                          Participant

                            Hi Julie, welcome to the club that no one wants to join!!! I follow Dr. Omid Hamid of the angeles clinic on twitter and they seem to have a lot of cutting edge(clinical trials) stuff going on over there as well. Best Wishes!!! Ed     http://www.theangelesclinic.org/

                            • August 23, 2016 at 7:59 pm
                            ed williams
                            Participant

                              Hi Julie, welcome to the club that no one wants to join!!! I follow Dr. Omid Hamid of the angeles clinic on twitter and they seem to have a lot of cutting edge(clinical trials) stuff going on over there as well. Best Wishes!!! Ed     http://www.theangelesclinic.org/

                              • August 23, 2016 at 7:59 pm
                              ed williams
                              Participant

                                Hi Julie, welcome to the club that no one wants to join!!! I follow Dr. Omid Hamid of the angeles clinic on twitter and they seem to have a lot of cutting edge(clinical trials) stuff going on over there as well. Best Wishes!!! Ed     http://www.theangelesclinic.org/

                                • August 23, 2016 at 11:07 pm
                                Polymath
                                Participant

                                  Hi Julie,

                                  Sorry you are stressing.  Just a couple of quick comments.  First you referred to your mets as "lit up".  That sounds like a PET scan, not a CT.  False positives on PET's are very common, and I too had something light up in my lungs, but the CT revealed nothing there, so perhaps I am way off here but just checking.  Second, yes, even after failing ipi, and pembro, there are options.  The combo of the two (nivo subs for pembro) has worked for some, who failed them as single agents.  And yes, there are trials.  You have options.  Hang in there.

                                  Gary

                                  • August 23, 2016 at 11:07 pm
                                  Polymath
                                  Participant

                                    Hi Julie,

                                    Sorry you are stressing.  Just a couple of quick comments.  First you referred to your mets as "lit up".  That sounds like a PET scan, not a CT.  False positives on PET's are very common, and I too had something light up in my lungs, but the CT revealed nothing there, so perhaps I am way off here but just checking.  Second, yes, even after failing ipi, and pembro, there are options.  The combo of the two (nivo subs for pembro) has worked for some, who failed them as single agents.  And yes, there are trials.  You have options.  Hang in there.

                                    Gary

                                    • August 23, 2016 at 11:07 pm
                                    Polymath
                                    Participant

                                      Hi Julie,

                                      Sorry you are stressing.  Just a couple of quick comments.  First you referred to your mets as "lit up".  That sounds like a PET scan, not a CT.  False positives on PET's are very common, and I too had something light up in my lungs, but the CT revealed nothing there, so perhaps I am way off here but just checking.  Second, yes, even after failing ipi, and pembro, there are options.  The combo of the two (nivo subs for pembro) has worked for some, who failed them as single agents.  And yes, there are trials.  You have options.  Hang in there.

                                      Gary

                                      • August 24, 2016 at 3:45 pm
                                      WithinMySkin
                                      Participant
                                        I’m so sorry, Julie!! I can totally relate to the 3c dilemma…it always feels like you’re just waiting for the bad news of stage 4 at any point in time. I’m so sorry that you’ve crossed that threshold! The good news (I know that doesn’t sound right, but its the only good thing about stage 4) is that there are a ton more systemic options and trials out there for you. Id do the same as you – keep surgery in your back pocket and look for another systemic treatment. Your roller coaster ride isn’t over yet, but we’re all here for you!

                                        Lauren

                                        • August 24, 2016 at 3:45 pm
                                        WithinMySkin
                                        Participant
                                          I’m so sorry, Julie!! I can totally relate to the 3c dilemma…it always feels like you’re just waiting for the bad news of stage 4 at any point in time. I’m so sorry that you’ve crossed that threshold! The good news (I know that doesn’t sound right, but its the only good thing about stage 4) is that there are a ton more systemic options and trials out there for you. Id do the same as you – keep surgery in your back pocket and look for another systemic treatment. Your roller coaster ride isn’t over yet, but we’re all here for you!

                                          Lauren

                                          • August 24, 2016 at 3:45 pm
                                          WithinMySkin
                                          Participant
                                            I’m so sorry, Julie!! I can totally relate to the 3c dilemma…it always feels like you’re just waiting for the bad news of stage 4 at any point in time. I’m so sorry that you’ve crossed that threshold! The good news (I know that doesn’t sound right, but its the only good thing about stage 4) is that there are a ton more systemic options and trials out there for you. Id do the same as you – keep surgery in your back pocket and look for another systemic treatment. Your roller coaster ride isn’t over yet, but we’re all here for you!

                                            Lauren

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