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What to do if IPI doesn’t work
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What to do if IPI doesn’t work

› Forums › General Melanoma Community › What to do if IPI doesn’t work

  • Post
    • July 26, 2014 at 6:19 am
    angtom
    Participant

      My husband has stage 4 melanoma and has been accepted to the TIL trial at Moffitt he is BRAF negative, my question is what is our back up if this does not work? I am just trying to get all of my options as a precaution. He will be doing the IPI – IL-2 Immunotherapy first IPI is on August 1st. I would appreciate any advice or anyones experience with this trial as I want to try to make him as comfortable as possible during these procedures. He is a healthy 51 year old and still working 6 days a week 10 to 14 hours a day, against my advice but it keeps him sane. I welcome any and all feed back, thank you so much.

    Viewing 2 reply threads
    • Replies
        • July 26, 2014 at 11:00 am
        RJoeyB
        Participant
          I'm sorry to hear about your husband's stage IV diagnosis, hopefully we can  provide some information and direction that will be helpful and encouraging to you as you embark on this significant step in the coming weeks.  A few notes for you:
           
          1) There is a blog, "Patient #1", written by T.J. Sharpe on Philly.com, detailing his experience with what I believe is the same trial at Moffitt that your husband is beginning, which I assume is the combination of TIL (which includes IL-2) and ipilimumab.  He does an excellent job writing about both that trial and his subsequent treatment (yes, there are options if this doesn't work!).  You can read more at:
           
           
          2) I personally have also received all three agents, IL-2 first as a separate monotherapy and eventually TIL (including more IL-2) down at the NIH in Bethesda in 2010-11, and then ipilimumab more recently in the spring of 2013 at my home hospital here in Philadelphia.  I have yet to reach NED — I've flirted with it a few times — but credit all three, especially the TIL — along with a trusted team of doctors who have guided us, with the fact that I'm still here fighting and living four years after my stage IV diagnosis.  I'm happy to share some of my experiences in the coming few days when I have some time to write.  If you search the site, you'll find some of what I've written recently, along with the experiences of many others.  You'll see that the experience with IL-2 can vary widely, but there are some definite commonalities.  The same goes for ipilimumab.
           
          Good for you as a caregiver for getting ahead of this and preparing, you play a critical role.  My experience was that the IL-2 was far and away the most disruptive, with multiple 5-7 day hospital stays required.  It can be a tough treatment for sure, but as they say, "your mileage may vary".  I bounced back quickly as do most, but it does require time off to let your body recover.  Since the TIL also requires IL-2, in addition to some chemotherapy, the same goes — I bounced back, but it was a longer hospital stay, nearly 3 weeks, and a couple of weeks to start feeling normal again.
           
          Finally, for now, also take comfort knowing that there are options after this, too, even being BRAF negative.  You'll see in T.J.'s blog that he has had good success with an anti-PD-1 inhibitor, as have many other posters here after failing other therapies, including TIL, IL-2, and/or ipilimumab.  
           
          Again, I hope to write more later this weekend if I can.  I'm in the midst of about ten days of several scans and follow-ups of my own, dealing with a potential new complication — if you have any specific questions and have a chance to write them, that would be helpful to us getting you some more specific answers.  In the meantime, I hope this info will get you started.
           
          Kindly,
          Joe
           
          • July 26, 2014 at 11:00 am
          RJoeyB
          Participant
            I'm sorry to hear about your husband's stage IV diagnosis, hopefully we can  provide some information and direction that will be helpful and encouraging to you as you embark on this significant step in the coming weeks.  A few notes for you:
             
            1) There is a blog, "Patient #1", written by T.J. Sharpe on Philly.com, detailing his experience with what I believe is the same trial at Moffitt that your husband is beginning, which I assume is the combination of TIL (which includes IL-2) and ipilimumab.  He does an excellent job writing about both that trial and his subsequent treatment (yes, there are options if this doesn't work!).  You can read more at:
             
             
            2) I personally have also received all three agents, IL-2 first as a separate monotherapy and eventually TIL (including more IL-2) down at the NIH in Bethesda in 2010-11, and then ipilimumab more recently in the spring of 2013 at my home hospital here in Philadelphia.  I have yet to reach NED — I've flirted with it a few times — but credit all three, especially the TIL — along with a trusted team of doctors who have guided us, with the fact that I'm still here fighting and living four years after my stage IV diagnosis.  I'm happy to share some of my experiences in the coming few days when I have some time to write.  If you search the site, you'll find some of what I've written recently, along with the experiences of many others.  You'll see that the experience with IL-2 can vary widely, but there are some definite commonalities.  The same goes for ipilimumab.
             
            Good for you as a caregiver for getting ahead of this and preparing, you play a critical role.  My experience was that the IL-2 was far and away the most disruptive, with multiple 5-7 day hospital stays required.  It can be a tough treatment for sure, but as they say, "your mileage may vary".  I bounced back quickly as do most, but it does require time off to let your body recover.  Since the TIL also requires IL-2, in addition to some chemotherapy, the same goes — I bounced back, but it was a longer hospital stay, nearly 3 weeks, and a couple of weeks to start feeling normal again.
             
            Finally, for now, also take comfort knowing that there are options after this, too, even being BRAF negative.  You'll see in T.J.'s blog that he has had good success with an anti-PD-1 inhibitor, as have many other posters here after failing other therapies, including TIL, IL-2, and/or ipilimumab.  
             
            Again, I hope to write more later this weekend if I can.  I'm in the midst of about ten days of several scans and follow-ups of my own, dealing with a potential new complication — if you have any specific questions and have a chance to write them, that would be helpful to us getting you some more specific answers.  In the meantime, I hope this info will get you started.
             
            Kindly,
            Joe
             
              • July 26, 2014 at 11:42 am
              ed williams
              Participant

                Joe, best of luck on the scans!!!!!

                • July 26, 2014 at 11:42 am
                ed williams
                Participant

                  Joe, best of luck on the scans!!!!!

                  • July 26, 2014 at 11:42 am
                  ed williams
                  Participant

                    Joe, best of luck on the scans!!!!!

                    • July 26, 2014 at 9:24 pm
                    BigSky
                    Participant

                      FYI I am a 56 year old male. Started Chemo for Stage IV   Melanoma in the lungs in November 2013. By March there was no progress. In May 2014 I started Yervoy treatments (ipi) and completed my treatments a couple of weeks ago.

                      Now I just wait. CT scans planned for August and December at which point I know if the ipi worked or not.

                      At this point I just wait; stay positive and continue to live life. Going to worry about my next steps when I get there

                      I still work 5 days a week, bike and hike on the weekends, and I played hockey last year when I had my chemo. Hockey starts in September and I have no plans to miss this season.

                      Next steps after ipi? New drugs are always on the horizon.

                       

                       

                       

                       

                       

                      • July 26, 2014 at 9:24 pm
                      BigSky
                      Participant

                        FYI I am a 56 year old male. Started Chemo for Stage IV   Melanoma in the lungs in November 2013. By March there was no progress. In May 2014 I started Yervoy treatments (ipi) and completed my treatments a couple of weeks ago.

                        Now I just wait. CT scans planned for August and December at which point I know if the ipi worked or not.

                        At this point I just wait; stay positive and continue to live life. Going to worry about my next steps when I get there

                        I still work 5 days a week, bike and hike on the weekends, and I played hockey last year when I had my chemo. Hockey starts in September and I have no plans to miss this season.

                        Next steps after ipi? New drugs are always on the horizon.

                         

                         

                         

                         

                         

                        • July 27, 2014 at 7:03 pm
                        jack6020
                        Participant

                          Ipi seems to be working for me. Brain and lung tumors shrinking. Still need scans.

                          • July 27, 2014 at 7:03 pm
                          jack6020
                          Participant

                            Ipi seems to be working for me. Brain and lung tumors shrinking. Still need scans.

                            • July 27, 2014 at 7:03 pm
                            jack6020
                            Participant

                              Ipi seems to be working for me. Brain and lung tumors shrinking. Still need scans.

                              • July 29, 2014 at 9:45 am
                              angtom
                              Participant

                                Thank you for answering I hope that this treatment works for you and would like to hear about your results. We are trying to stay positive some days are better than others but we are strong and will fight this. Good luck to you and enjoy those hockey games.

                                 

                                Thanks

                                Angie

                                • July 29, 2014 at 9:45 am
                                angtom
                                Participant

                                  Thank you for answering I hope that this treatment works for you and would like to hear about your results. We are trying to stay positive some days are better than others but we are strong and will fight this. Good luck to you and enjoy those hockey games.

                                   

                                  Thanks

                                  Angie

                                  • July 29, 2014 at 9:45 am
                                  angtom
                                  Participant

                                    Thank you for answering I hope that this treatment works for you and would like to hear about your results. We are trying to stay positive some days are better than others but we are strong and will fight this. Good luck to you and enjoy those hockey games.

                                     

                                    Thanks

                                    Angie

                                    • July 26, 2014 at 9:24 pm
                                    BigSky
                                    Participant

                                      FYI I am a 56 year old male. Started Chemo for Stage IV   Melanoma in the lungs in November 2013. By March there was no progress. In May 2014 I started Yervoy treatments (ipi) and completed my treatments a couple of weeks ago.

                                      Now I just wait. CT scans planned for August and December at which point I know if the ipi worked or not.

                                      At this point I just wait; stay positive and continue to live life. Going to worry about my next steps when I get there

                                      I still work 5 days a week, bike and hike on the weekends, and I played hockey last year when I had my chemo. Hockey starts in September and I have no plans to miss this season.

                                      Next steps after ipi? New drugs are always on the horizon.

                                       

                                       

                                       

                                       

                                       

                                      • July 29, 2014 at 9:41 am
                                      angtom
                                      Participant

                                        I am sorry to hear about your diagnoses and I thank you for taking the time to answer my questions. I have read the blog and it has wonderful information that I can use. I look forward to reading more, I wish you well on your up coming scans  and follow ups.

                                         

                                        Thank you,

                                        Angie

                                        • July 29, 2014 at 9:41 am
                                        angtom
                                        Participant

                                          I am sorry to hear about your diagnoses and I thank you for taking the time to answer my questions. I have read the blog and it has wonderful information that I can use. I look forward to reading more, I wish you well on your up coming scans  and follow ups.

                                           

                                          Thank you,

                                          Angie

                                          • July 29, 2014 at 9:41 am
                                          angtom
                                          Participant

                                            I am sorry to hear about your diagnoses and I thank you for taking the time to answer my questions. I have read the blog and it has wonderful information that I can use. I look forward to reading more, I wish you well on your up coming scans  and follow ups.

                                             

                                            Thank you,

                                            Angie

                                          • July 26, 2014 at 11:00 am
                                          RJoeyB
                                          Participant
                                            I'm sorry to hear about your husband's stage IV diagnosis, hopefully we can  provide some information and direction that will be helpful and encouraging to you as you embark on this significant step in the coming weeks.  A few notes for you:
                                             
                                            1) There is a blog, "Patient #1", written by T.J. Sharpe on Philly.com, detailing his experience with what I believe is the same trial at Moffitt that your husband is beginning, which I assume is the combination of TIL (which includes IL-2) and ipilimumab.  He does an excellent job writing about both that trial and his subsequent treatment (yes, there are options if this doesn't work!).  You can read more at:
                                             
                                             
                                            2) I personally have also received all three agents, IL-2 first as a separate monotherapy and eventually TIL (including more IL-2) down at the NIH in Bethesda in 2010-11, and then ipilimumab more recently in the spring of 2013 at my home hospital here in Philadelphia.  I have yet to reach NED — I've flirted with it a few times — but credit all three, especially the TIL — along with a trusted team of doctors who have guided us, with the fact that I'm still here fighting and living four years after my stage IV diagnosis.  I'm happy to share some of my experiences in the coming few days when I have some time to write.  If you search the site, you'll find some of what I've written recently, along with the experiences of many others.  You'll see that the experience with IL-2 can vary widely, but there are some definite commonalities.  The same goes for ipilimumab.
                                             
                                            Good for you as a caregiver for getting ahead of this and preparing, you play a critical role.  My experience was that the IL-2 was far and away the most disruptive, with multiple 5-7 day hospital stays required.  It can be a tough treatment for sure, but as they say, "your mileage may vary".  I bounced back quickly as do most, but it does require time off to let your body recover.  Since the TIL also requires IL-2, in addition to some chemotherapy, the same goes — I bounced back, but it was a longer hospital stay, nearly 3 weeks, and a couple of weeks to start feeling normal again.
                                             
                                            Finally, for now, also take comfort knowing that there are options after this, too, even being BRAF negative.  You'll see in T.J.'s blog that he has had good success with an anti-PD-1 inhibitor, as have many other posters here after failing other therapies, including TIL, IL-2, and/or ipilimumab.  
                                             
                                            Again, I hope to write more later this weekend if I can.  I'm in the midst of about ten days of several scans and follow-ups of my own, dealing with a potential new complication — if you have any specific questions and have a chance to write them, that would be helpful to us getting you some more specific answers.  In the meantime, I hope this info will get you started.
                                             
                                            Kindly,
                                            Joe
                                             
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