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Finished IL-2 – back at work

Forums General Melanoma Community Finished IL-2 – back at work

  • Post
    NYKaren
    Participant

      Hi everyone,

      I finished my second round of IL-2 LAST Sunday and returned to work part-time today.

      What a rough treatment.  They were shocked that I finished all 8 bags (Yale-New Haven has a different protocol–it's a different dosage and fewer bags). 

      When I went to Dr. Sznol for check-up the Thursday after the Sunday I was released, he says that's always when he sees people at their worst.  I felt like someone had run me over with a truck and hung me on a peg to dry.  

      Hi everyone,

      I finished my second round of IL-2 LAST Sunday and returned to work part-time today.

      What a rough treatment.  They were shocked that I finished all 8 bags (Yale-New Haven has a different protocol–it's a different dosage and fewer bags). 

      When I went to Dr. Sznol for check-up the Thursday after the Sunday I was released, he says that's always when he sees people at their worst.  I felt like someone had run me over with a truck and hung me on a peg to dry.  

      Having said all that, I'm much better today and plan to start working full time on Wednesday.

      So before I went in we knew that the nodes that had lit up on prior PET's don't light up anymore.  A lot of the mel is gone from my face, so we know that I'm at least a partial responder.  Unfortunately, I continue to get small spots…going to see Dr. Halpern (derm @ Sloan) hopefully next week and lining up a visit in 1 month for some punch biopsies, then scans.

      They wanted me to get into the Gentech anti-PD1 trial, but interestingly, it does not include the "stage III unresectible"…it's strictly for Stage IV.

      Dr. Sznol also told me that GSK will be doing a Phase 3 anti PD-1 trial in about 4 months that I should be able to get into.

      So now it's wait and see & pray that I stay at IIIC for the next 4 months.

      That's it for now…take care my friends.

      karen

    Viewing 8 reply threads
    • Replies
        marfda
        Participant

          Congrats on finishing your second round and the partial response! I just found out I'm going to be an IL-2 girl, also. Hope you continue to bouce back. Will you go for a third round?

          marfda
          Participant

            Congrats on finishing your second round and the partial response! I just found out I'm going to be an IL-2 girl, also. Hope you continue to bouce back. Will you go for a third round?

            marfda
            Participant

              Congrats on finishing your second round and the partial response! I just found out I'm going to be an IL-2 girl, also. Hope you continue to bouce back. Will you go for a third round?

              boot2aboot
              Participant

                Karen,

                this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy.   There is a good webinar discussing anti PD1 on melanoma international website.

                so far, this is what i have learned (remembered)….

                response rates (full and partial-partial being 50% reduction in tumors)

                IL2   10%

                IPI    15%

                AntiPD1 30%

                response rates seem to be long lasting…

                prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2

                Side Effects

                arthragia, sore mouth, rash, abnormal labs

                more serious…shortness of breath, endocrine interactions

                There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.

                 

                they want to combine this drug with others (because of the long lasting results they get and low side effects…)

                -ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.

                 

                You were very brave to do IL2 and it seems to have worked

                boots

                  boot2aboot
                  Participant

                    You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.

                    boots

                    boot2aboot
                    Participant

                      You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.

                      boots

                      boot2aboot
                      Participant

                        You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.

                        boots

                      boot2aboot
                      Participant

                        Karen,

                        this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy.   There is a good webinar discussing anti PD1 on melanoma international website.

                        so far, this is what i have learned (remembered)….

                        response rates (full and partial-partial being 50% reduction in tumors)

                        IL2   10%

                        IPI    15%

                        AntiPD1 30%

                        response rates seem to be long lasting…

                        prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2

                        Side Effects

                        arthragia, sore mouth, rash, abnormal labs

                        more serious…shortness of breath, endocrine interactions

                        There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.

                         

                        they want to combine this drug with others (because of the long lasting results they get and low side effects…)

                        -ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.

                         

                        You were very brave to do IL2 and it seems to have worked

                        boots

                        boot2aboot
                        Participant

                          Karen,

                          this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy.   There is a good webinar discussing anti PD1 on melanoma international website.

                          so far, this is what i have learned (remembered)….

                          response rates (full and partial-partial being 50% reduction in tumors)

                          IL2   10%

                          IPI    15%

                          AntiPD1 30%

                          response rates seem to be long lasting…

                          prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2

                          Side Effects

                          arthragia, sore mouth, rash, abnormal labs

                          more serious…shortness of breath, endocrine interactions

                          There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.

                           

                          they want to combine this drug with others (because of the long lasting results they get and low side effects…)

                          -ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.

                           

                          You were very brave to do IL2 and it seems to have worked

                          boots

                          wgalinat
                          Participant
                            Just a thought, NIH. They may take you immediately. I went through their trial five years ago. If interested you might read my small story.
                            Google my name, warren Galinat, and see “white brows”. In any case, the best of luck to you !!
                            wgalinat
                            Participant
                              Just a thought, NIH. They may take you immediately. I went through their trial five years ago. If interested you might read my small story.
                              Google my name, warren Galinat, and see “white brows”. In any case, the best of luck to you !!
                              wgalinat
                              Participant
                                Just a thought, NIH. They may take you immediately. I went through their trial five years ago. If interested you might read my small story.
                                Google my name, warren Galinat, and see “white brows”. In any case, the best of luck to you !!
                                  NYKaren
                                  Participant

                                    Thanks, I'll look into NIH.

                                    Also, I meant to say Curetech, not Gentech.

                                    Yes, Boots, I'm IIIC.  I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…"  as in WLE w/clear margins and clean SNB in November, recurrence in February.

                                    Anti-PDI really looks good.  I guess I'll know more after next set of biopsies/scans.

                                    NYKaren
                                    Participant

                                      Thanks, I'll look into NIH.

                                      Also, I meant to say Curetech, not Gentech.

                                      Yes, Boots, I'm IIIC.  I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…"  as in WLE w/clear margins and clean SNB in November, recurrence in February.

                                      Anti-PDI really looks good.  I guess I'll know more after next set of biopsies/scans.

                                      NYKaren
                                      Participant

                                        Also Boots, I got Ipi right after it was FDA approved.  There was a little lag time between when it was approved and stocked for use.  I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy."  I bet they were shocked!

                                        NYKaren
                                        Participant

                                          Also Boots, I got Ipi right after it was FDA approved.  There was a little lag time between when it was approved and stocked for use.  I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy."  I bet they were shocked!

                                          NYKaren
                                          Participant

                                            Also Boots, I got Ipi right after it was FDA approved.  There was a little lag time between when it was approved and stocked for use.  I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy."  I bet they were shocked!

                                            NYKaren
                                            Participant

                                              Thanks, I'll look into NIH.

                                              Also, I meant to say Curetech, not Gentech.

                                              Yes, Boots, I'm IIIC.  I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…"  as in WLE w/clear margins and clean SNB in November, recurrence in February.

                                              Anti-PDI really looks good.  I guess I'll know more after next set of biopsies/scans.

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