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IL-2 or TIL Study at NIH?

Forums General Melanoma Community IL-2 or TIL Study at NIH?

  • Post
    MariaH
    Participant

      Dave and I have been in contact with NIH regarding their clinical trial with TIL, chemo, irradiation, and IL-2.  They are asking that once we get the results of Dave's pretesting for IL-2 at Roswell, we forward them to them.  They said they can remove part of Dave's tumor prior to doing IL-2 treatment at Roswell and start growing the TIL cells if IL-2 fails.  Since the IL-2 protocol takes up to 8 weeks, this to me sounded like a good back up plan.  However, now I am wondering – should Dave do the IL-2 first and wait to see if it works or should he look into going

      Dave and I have been in contact with NIH regarding their clinical trial with TIL, chemo, irradiation, and IL-2.  They are asking that once we get the results of Dave's pretesting for IL-2 at Roswell, we forward them to them.  They said they can remove part of Dave's tumor prior to doing IL-2 treatment at Roswell and start growing the TIL cells if IL-2 fails.  Since the IL-2 protocol takes up to 8 weeks, this to me sounded like a good back up plan.  However, now I am wondering – should Dave do the IL-2 first and wait to see if it works or should he look into going to NIH and start his treatment there (IF he is accepted by them)?

      I guess having options is better than having none, but it really is so difficult to decide.  Any thoughts/opinions would be greatly appreciated.

       

      Maria & Dave

    Viewing 9 reply threads
    • Replies
        lhaley
        Participant

          How much time would it be to get accepted at NIH, surgery, then recovery before he could do IL2?  Depending on his personel history that has to be considered. If passing the tests allow him to begin at Roswell the treatment could start immediately.   You will know in month if he is responding. Would NIH accept a tumor that has just gone through IL2?   How dificult would the surgery be to get the cells? 

          This would give you a backup plan if IL2 doesn't work. However I would be concerned if it would put the IL2 off 6 -8 weeks and was a difficult surgery. Whatever choice Dave makes he can only look forward.

          lhaley
          Participant

            How much time would it be to get accepted at NIH, surgery, then recovery before he could do IL2?  Depending on his personel history that has to be considered. If passing the tests allow him to begin at Roswell the treatment could start immediately.   You will know in month if he is responding. Would NIH accept a tumor that has just gone through IL2?   How dificult would the surgery be to get the cells? 

            This would give you a backup plan if IL2 doesn't work. However I would be concerned if it would put the IL2 off 6 -8 weeks and was a difficult surgery. Whatever choice Dave makes he can only look forward.

            FormerCaregiver
            Participant

              Has Dave's oncologist made any suggestions regarding treatment options? I think that it is
              really difficult to predict how someone will respond to IL-2, and how long that response
              will last. One could possibly try IL-2, and then follow it with Yervoy.

              The TIL treatment at the National Institutes of Health has tremendous potential, and it
              has the best chance of giving the patient a durable remission. However, there are no
              guarantees that any current treatment will do this as there is a lot of research still to
              be done.

              Best wishes

              Frank from Australia

                MariaH
                Participant

                  Actually Frank, his current plan is to try IL-2 first then IPI if he doesn't respond (as recommended by his onc and surgeon).  However, after researching clinical trials and hearing from others, I think that doing the TIL route may be his second choice – or maybe even his first.

                  I wish we knew which one he would respond to….

                  MariaH
                  Participant

                    Actually Frank, his current plan is to try IL-2 first then IPI if he doesn't respond (as recommended by his onc and surgeon).  However, after researching clinical trials and hearing from others, I think that doing the TIL route may be his second choice – or maybe even his first.

                    I wish we knew which one he would respond to….

                  FormerCaregiver
                  Participant

                    Has Dave's oncologist made any suggestions regarding treatment options? I think that it is
                    really difficult to predict how someone will respond to IL-2, and how long that response
                    will last. One could possibly try IL-2, and then follow it with Yervoy.

                    The TIL treatment at the National Institutes of Health has tremendous potential, and it
                    has the best chance of giving the patient a durable remission. However, there are no
                    guarantees that any current treatment will do this as there is a lot of research still to
                    be done.

                    Best wishes

                    Frank from Australia

                    jim Breitfeller
                    Participant

                      Maria and Dave,

                      If it was me , Based on Rosenburg's  response rate, I would opt to do the TIL therapy first.

                      Here is my reasoning:

                      1) Tregs are in high levels in stage 1 and IV  ( surppress the immune response

                      2) IL-2 can be a growth factor for CD4+/Tcells along with Tregs (Not Good)

                      L-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast, IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells. IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).

                      This means the timing of IL-2 during  growth phase is crucial in Dave's therapy.

                      Prior  Chemo/IL-2 to the TIL only produced a 16 % complete response

                      Prior IL-2 to the TIL only produced a 18 % complete response

                      No prior therapy  to the TIL produced a 40 % complete response

                      Prior  Chemotherapy to the TIL only produced a 18 % complete response

                      IL-2 therapy by itself  had a 3-6 % complete response

                      Did you ever do Ipi / Yervoy?

                       

                      Jimmy B

                      jim Breitfeller
                      Participant

                        Maria and Dave,

                        If it was me , Based on Rosenburg's  response rate, I would opt to do the TIL therapy first.

                        Here is my reasoning:

                        1) Tregs are in high levels in stage 1 and IV  ( surppress the immune response

                        2) IL-2 can be a growth factor for CD4+/Tcells along with Tregs (Not Good)

                        L-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast, IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells. IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).

                        This means the timing of IL-2 during  growth phase is crucial in Dave's therapy.

                        Prior  Chemo/IL-2 to the TIL only produced a 16 % complete response

                        Prior IL-2 to the TIL only produced a 18 % complete response

                        No prior therapy  to the TIL produced a 40 % complete response

                        Prior  Chemotherapy to the TIL only produced a 18 % complete response

                        IL-2 therapy by itself  had a 3-6 % complete response

                        Did you ever do Ipi / Yervoy?

                         

                        Jimmy B

                          MariaH
                          Participant

                            Thanks for the numbers Jim.  He has not done anything yet – he is doing his PET and Brain MRI today, nuclear stress on Monday, doctor visit on Wednesday, then start IL-2 on 8/1 (pending there are no brain mets and his heart is good).  I'm not convinced on IPI's success rate yet as a complete response regimen alone, especially given the side effects they told him about.  He's not looking for 6+ months, he's looking for a complete response.  Mind you, he'll take stability – but if he's going to play the game, he wants to swing for a homerun and hope for a base hit – not the other way around.

                            Guess we will wait for the test results and call NIH when we get them.  His oncologist was in favor of Dave looking at clinical trials, but I don't know how he will feel about Dave having surgery and holding up IL-2. 

                            jim Breitfeller
                            Participant

                              Maria,

                              When I had tumors in my lungs, I opted not to have surgery because of the delay in starting therapy. I am also diabetic, which slow down the healing process.

                              I widh you all the best

                              And what every you decide, never look back. The complete response is over the next hill.

                              You just have to get there.

                               

                              Jimmy B

                              jim Breitfeller
                              Participant

                                Maria,

                                When I had tumors in my lungs, I opted not to have surgery because of the delay in starting therapy. I am also diabetic, which slow down the healing process.

                                I widh you all the best

                                And what every you decide, never look back. The complete response is over the next hill.

                                You just have to get there.

                                 

                                Jimmy B

                                MariaH
                                Participant

                                  Thanks for the numbers Jim.  He has not done anything yet – he is doing his PET and Brain MRI today, nuclear stress on Monday, doctor visit on Wednesday, then start IL-2 on 8/1 (pending there are no brain mets and his heart is good).  I'm not convinced on IPI's success rate yet as a complete response regimen alone, especially given the side effects they told him about.  He's not looking for 6+ months, he's looking for a complete response.  Mind you, he'll take stability – but if he's going to play the game, he wants to swing for a homerun and hope for a base hit – not the other way around.

                                  Guess we will wait for the test results and call NIH when we get them.  His oncologist was in favor of Dave looking at clinical trials, but I don't know how he will feel about Dave having surgery and holding up IL-2. 

                                ValinMtl
                                Participant

                                  Hi Maria, I am presently trying to qualify for the TIL at NIH http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

                                  They have removed two masses from my left groin.  I can't say enough about the high quality of care and knowledge there, absolutely excellent.  If you note, the above trial does also include IL-2..I believe it is 12 bags.   But IL-2 by itself has pretty good total response.  I did ipi but IL-2 was not available in Quebec so I didn't have to hesitate about the TIL…Best wishes in making your decision, Val

                                  ValinMtl
                                  Participant

                                    Hi Maria, I am presently trying to qualify for the TIL at NIH http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

                                    They have removed two masses from my left groin.  I can't say enough about the high quality of care and knowledge there, absolutely excellent.  If you note, the above trial does also include IL-2..I believe it is 12 bags.   But IL-2 by itself has pretty good total response.  I did ipi but IL-2 was not available in Quebec so I didn't have to hesitate about the TIL…Best wishes in making your decision, Val

                                      ValinMtl
                                      Participant

                                        of course, I should clarify..'pretty good total response'..it's not 10% but better than most treatments!   As Jim mentioned, have you tried ipi as yet.  Val

                                        MariaH
                                        Participant

                                          Actually Val, the whole reason I contacted NIH was because of a post you had earlier.  Could you let me know what your screening process has consisted of and how long it has taken?  It may be a deciding factor for Dave.

                                          I really hope you are accepted and it works for you… you are such an inspiration!!

                                          MariaH
                                          Participant

                                            Actually Val, the whole reason I contacted NIH was because of a post you had earlier.  Could you let me know what your screening process has consisted of and how long it has taken?  It may be a deciding factor for Dave.

                                            I really hope you are accepted and it works for you… you are such an inspiration!!

                                            ValinMtl
                                            Participant

                                              of course, I should clarify..'pretty good total response'..it's not 10% but better than most treatments!   As Jim mentioned, have you tried ipi as yet.  Val

                                            wgalinat
                                            Participant
                                              If considering NIH, perhaps read my story….
                                              Look up on google…. Warren Galinat
                                              Then click on ‘white brows’
                                              It’s my NIH journey

                                              Best of luck to you. Warren G

                                                ValinMtl
                                                Participant

                                                  Thank goodness, I read Warren's blog, it's what got me going on my journey!  Val

                                                  MariaH
                                                  Participant

                                                    Actually Val, your "thank you" to Warren is what had me look up his story and look into this trial.  If it wasn't for the MPIP board, I would have never brought this up to Dave's oncologist.  I will be forever grateful for both of your posts to this board – THANK YOU!!

                                                    MariaH
                                                    Participant

                                                      Actually Val, your "thank you" to Warren is what had me look up his story and look into this trial.  If it wasn't for the MPIP board, I would have never brought this up to Dave's oncologist.  I will be forever grateful for both of your posts to this board – THANK YOU!!

                                                      ValinMtl
                                                      Participant

                                                        Thank goodness, I read Warren's blog, it's what got me going on my journey!  Val

                                                      wgalinat
                                                      Participant
                                                        If considering NIH, perhaps read my story….
                                                        Look up on google…. Warren Galinat
                                                        Then click on ‘white brows’
                                                        It’s my NIH journey

                                                        Best of luck to you. Warren G

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