Ipi & HD IL-2

Forums General Melanoma Community Ipi & HD IL-2

  • Post
    JoshF
    Participant

      So my oncologist suggested aggressive treatment for lung nodule. Thought is that it got there through the blood. Only thing that lit up on PET. So I agreed to enter the trial and got randomized to ipi first. I start on Wednesday. 4 infusions over 12 weeks. A small break then followed by HD IL-2. Anyone participating or have any knowledge of the study? It's sponsored by Prometheus Labs. Kinda wondering what to expect. I see well respected melanoma specialists and they feel this is best course of treatment. Thisis  all a bit overwhelming.

      Josh

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    • Replies
        POW
        Participant

           

          Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

          The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

          Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

          POW
          Participant

             

            Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

            The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

            Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

            POW
            Participant

               

              Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

              The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

              Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

              POW
              Participant

                Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

                The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

                Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

                POW
                Participant

                  Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

                  The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

                  Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

                  POW
                  Participant

                    Josh, I am sorry that your lung lesion turned out to be melanoma. I know you suspected that it might be, but it's an emotional blow, anyway. I am sorry for that.

                    The clinical trial you are starting sounds like an excellent choice. The trial just opened in July and is one of the first to combine 2 immune-based treatments. It involves giving both IL-2 and ipi, which will hopefully really rev up your immune system to fight the melanoma. One arm get the ipi first and then the IL-2 and the other arm gets the IL-2 first and then the ipi. You can only get into this trial if you are treatment naive or have had no more then one (non-immune) treatment. So your timing is great!

                    Again, I am sorry that you progressed but I am very optimistic about the treatment you chose. Try to eat healthfully, get some regular exercise and most of all, hang on to you positive mental attitude!

                    JerryfromFauq
                    Participant

                      Josh, Have  you followed Jimmy B's research in this area?       http://melanomamissionary.blogspot.com/       .

                      Melanoma and the “Magic Bullet” (Monoclonal Antibodies)

                      It is very interesting and talks about the timing between the the two treatments which Jimmy believes lead  to his  NED status.  My oncologists have found his  work very  interesting. 

                        JoshF
                        Participant

                          Jerry-

                           

                          I have not seen this but just clicked on link and took a quick peek. I'm definitely going to check this out….looks really interesting.

                           

                          On another note, how are you my friend?

                          JoshF
                          Participant

                            Jerry-

                             

                            I have not seen this but just clicked on link and took a quick peek. I'm definitely going to check this out….looks really interesting.

                             

                            On another note, how are you my friend?

                            JerryfromFauq
                            Participant

                              Dooiing better than the Doc's can explain!  Getting bsck down on how long I sleep now.  Sometimes only 10 hours a night.  (Advantages of being an  OLD man.)

                              Semper Fi

                              JerryfromFauq
                              Participant

                                Dooiing better than the Doc's can explain!  Getting bsck down on how long I sleep now.  Sometimes only 10 hours a night.  (Advantages of being an  OLD man.)

                                Semper Fi

                                JerryfromFauq
                                Participant

                                  Dooiing better than the Doc's can explain!  Getting bsck down on how long I sleep now.  Sometimes only 10 hours a night.  (Advantages of being an  OLD man.)

                                  Semper Fi

                                  JoshF
                                  Participant

                                    Jerry-

                                     

                                    I have not seen this but just clicked on link and took a quick peek. I'm definitely going to check this out….looks really interesting.

                                     

                                    On another note, how are you my friend?

                                  JerryfromFauq
                                  Participant

                                    Josh, Have  you followed Jimmy B's research in this area?       http://melanomamissionary.blogspot.com/       .

                                    Melanoma and the “Magic Bullet” (Monoclonal Antibodies)

                                    It is very interesting and talks about the timing between the the two treatments which Jimmy believes lead  to his  NED status.  My oncologists have found his  work very  interesting. 

                                    JerryfromFauq
                                    Participant

                                      Josh, Have  you followed Jimmy B's research in this area?       http://melanomamissionary.blogspot.com/       .

                                      Melanoma and the “Magic Bullet” (Monoclonal Antibodies)

                                      It is very interesting and talks about the timing between the the two treatments which Jimmy believes lead  to his  NED status.  My oncologists have found his  work very  interesting. 

                                      JC
                                      Participant

                                        Josh, will be thinking of you.  You're in Chicago area, which melanoma specialists are you seeing, at Northwestern? 

                                        JC
                                        Participant

                                          Josh, will be thinking of you.  You're in Chicago area, which melanoma specialists are you seeing, at Northwestern? 

                                            JoshF
                                            Participant

                                              I actually see surgical oncologistat NWM who specializes in melanoma and  medical oncologists at Advocate Lutheran General.They share many patients. I was going to speak to or get 2nd opinion from Kuzel at NWM. I conferred with my surgical oncologist who said either way I was in good hands. I have been happy with medical oncologists but Northwestern is a top notch facility. My aunt is who is in medical field and I discussed and felt this was good option for me.

                                              JoshF
                                              Participant

                                                I actually see surgical oncologistat NWM who specializes in melanoma and  medical oncologists at Advocate Lutheran General.They share many patients. I was going to speak to or get 2nd opinion from Kuzel at NWM. I conferred with my surgical oncologist who said either way I was in good hands. I have been happy with medical oncologists but Northwestern is a top notch facility. My aunt is who is in medical field and I discussed and felt this was good option for me.

                                                JoshF
                                                Participant

                                                  I actually see surgical oncologistat NWM who specializes in melanoma and  medical oncologists at Advocate Lutheran General.They share many patients. I was going to speak to or get 2nd opinion from Kuzel at NWM. I conferred with my surgical oncologist who said either way I was in good hands. I have been happy with medical oncologists but Northwestern is a top notch facility. My aunt is who is in medical field and I discussed and felt this was good option for me.

                                                JC
                                                Participant

                                                  Josh, will be thinking of you.  You're in Chicago area, which melanoma specialists are you seeing, at Northwestern? 

                                                  ecc26
                                                  Participant

                                                    Interesting that they're doing this trial. I hope you have good results.

                                                    I have been through both therapies and from my perspective, Ipi is much easier on the body, though it does carry a risk for some severe side effects. I mostly had some diarrhea, occasional nausea, and at points, some fatigue. If they're using the 10mg/kg dose rather than the approved 3 mg/kg dose you may have more symptoms than the average person getting Ipi. 

                                                    IL-2 on the other hand is very difficult. I'm assuming they're following the standard protocol, which basically has you hospitalized for a week at a time while they dose you several times a day as long as your body can handle it. It's extremely hard and my guess is that there will be points when you want to quit, stop the therapy and just go home. I did. Just try to keep in mind that as bad as you feel while you're there, within a couple of days after they stop the doses, you'll feel almost normal again so it doesn't last long. Just grit your teeth and count down the days to the end of the week.

                                                    One thing I find interesting about this trial- I did IL-2 first because all my doctors told me that it was well documented that people that did IL-2 before Ipi were not at greater risk of the more severe side effects (specifically colitis leading to bowel perforation), but that people who did Ipi before IL-2 were at greater risk for those side effects. Either way, be sure to monitor your side effects and communicate well with your doctors, because some of them really are scary and you want to keep ahead of them as much as possible. 

                                                    Good luck to you!

                                                    -Eva

                                                    ecc26
                                                    Participant

                                                      Interesting that they're doing this trial. I hope you have good results.

                                                      I have been through both therapies and from my perspective, Ipi is much easier on the body, though it does carry a risk for some severe side effects. I mostly had some diarrhea, occasional nausea, and at points, some fatigue. If they're using the 10mg/kg dose rather than the approved 3 mg/kg dose you may have more symptoms than the average person getting Ipi. 

                                                      IL-2 on the other hand is very difficult. I'm assuming they're following the standard protocol, which basically has you hospitalized for a week at a time while they dose you several times a day as long as your body can handle it. It's extremely hard and my guess is that there will be points when you want to quit, stop the therapy and just go home. I did. Just try to keep in mind that as bad as you feel while you're there, within a couple of days after they stop the doses, you'll feel almost normal again so it doesn't last long. Just grit your teeth and count down the days to the end of the week.

                                                      One thing I find interesting about this trial- I did IL-2 first because all my doctors told me that it was well documented that people that did IL-2 before Ipi were not at greater risk of the more severe side effects (specifically colitis leading to bowel perforation), but that people who did Ipi before IL-2 were at greater risk for those side effects. Either way, be sure to monitor your side effects and communicate well with your doctors, because some of them really are scary and you want to keep ahead of them as much as possible. 

                                                      Good luck to you!

                                                      -Eva

                                                      ecc26
                                                      Participant

                                                        Interesting that they're doing this trial. I hope you have good results.

                                                        I have been through both therapies and from my perspective, Ipi is much easier on the body, though it does carry a risk for some severe side effects. I mostly had some diarrhea, occasional nausea, and at points, some fatigue. If they're using the 10mg/kg dose rather than the approved 3 mg/kg dose you may have more symptoms than the average person getting Ipi. 

                                                        IL-2 on the other hand is very difficult. I'm assuming they're following the standard protocol, which basically has you hospitalized for a week at a time while they dose you several times a day as long as your body can handle it. It's extremely hard and my guess is that there will be points when you want to quit, stop the therapy and just go home. I did. Just try to keep in mind that as bad as you feel while you're there, within a couple of days after they stop the doses, you'll feel almost normal again so it doesn't last long. Just grit your teeth and count down the days to the end of the week.

                                                        One thing I find interesting about this trial- I did IL-2 first because all my doctors told me that it was well documented that people that did IL-2 before Ipi were not at greater risk of the more severe side effects (specifically colitis leading to bowel perforation), but that people who did Ipi before IL-2 were at greater risk for those side effects. Either way, be sure to monitor your side effects and communicate well with your doctors, because some of them really are scary and you want to keep ahead of them as much as possible. 

                                                        Good luck to you!

                                                        -Eva

                                                        Linny
                                                        Participant

                                                          So the good news is that only one thing lit up on your PET. Sounds like your doctors are not taking any chances, which is also good. This trial sounds like a "one, two punch" against melanoma. Both drugs have been known to cause your immune system to kick melanoma's butt. This sounds like a fascinating trial.

                                                          Yes, it is overwhelming. But it sounds like you're in really good hands.

                                                          Linny
                                                          Participant

                                                            So the good news is that only one thing lit up on your PET. Sounds like your doctors are not taking any chances, which is also good. This trial sounds like a "one, two punch" against melanoma. Both drugs have been known to cause your immune system to kick melanoma's butt. This sounds like a fascinating trial.

                                                            Yes, it is overwhelming. But it sounds like you're in really good hands.

                                                            Linny
                                                            Participant

                                                              So the good news is that only one thing lit up on your PET. Sounds like your doctors are not taking any chances, which is also good. This trial sounds like a "one, two punch" against melanoma. Both drugs have been known to cause your immune system to kick melanoma's butt. This sounds like a fascinating trial.

                                                              Yes, it is overwhelming. But it sounds like you're in really good hands.

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