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?? for long term IPI responders
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?? for long term IPI responders

› Forums › General Melanoma Community › ?? for long term IPI responders

  • Post
    • July 19, 2016 at 10:43 am
    Jewel
    Participant

      Hi there,

         My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

      weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

      were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

      Jewel

    Viewing 11 reply threads
    • Replies
        • July 19, 2016 at 2:23 pm
        JoshF
        Participant

          Hi Jewel-

          I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

          Josh

          • July 19, 2016 at 2:23 pm
          JoshF
          Participant

            Hi Jewel-

            I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

            Josh

              • July 19, 2016 at 3:49 pm
              Lee Parlier
              Participant

                Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

                • July 19, 2016 at 3:49 pm
                Lee Parlier
                Participant

                  Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

                  • July 19, 2016 at 3:49 pm
                  Lee Parlier
                  Participant

                    Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

                    • July 19, 2016 at 4:25 pm
                    JoshF
                    Participant

                      Lee-

                      I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

                      • July 19, 2016 at 4:25 pm
                      JoshF
                      Participant

                        Lee-

                        I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

                        • July 19, 2016 at 4:25 pm
                        JoshF
                        Participant

                          Lee-

                          I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

                          • July 19, 2016 at 8:34 pm
                          Lee Parlier
                          Participant

                            Thanks..you too

                            • July 19, 2016 at 8:34 pm
                            Lee Parlier
                            Participant

                              Thanks..you too

                              • July 19, 2016 at 8:34 pm
                              Lee Parlier
                              Participant

                                Thanks..you too

                              • July 19, 2016 at 2:23 pm
                              JoshF
                              Participant

                                Hi Jewel-

                                I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

                                Josh

                                • July 19, 2016 at 10:10 pm
                                MoiraM
                                Participant

                                  I am not yet a long-term responder.

                                  I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

                                  My next scan is in a month's time.

                                  • July 19, 2016 at 10:10 pm
                                  MoiraM
                                  Participant

                                    I am not yet a long-term responder.

                                    I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

                                    My next scan is in a month's time.

                                    • July 19, 2016 at 10:10 pm
                                    MoiraM
                                    Participant

                                      I am not yet a long-term responder.

                                      I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

                                      My next scan is in a month's time.

                                      • July 21, 2016 at 4:30 am
                                      WITom
                                      Participant

                                        I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

                                        Tom

                                         

                                        • July 21, 2016 at 4:30 am
                                        WITom
                                        Participant

                                          I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

                                          Tom

                                           

                                          • July 21, 2016 at 4:30 am
                                          WITom
                                          Participant

                                            I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

                                            Tom

                                             

                                            • July 22, 2016 at 3:56 am
                                            Rocco
                                            Participant

                                              Hi Jewel,

                                              I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

                                              -Rocco

                                              Stage IV in 2005, NED since 2009, IPI responder

                                              • July 22, 2016 at 3:56 am
                                              Rocco
                                              Participant

                                                Hi Jewel,

                                                I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

                                                -Rocco

                                                Stage IV in 2005, NED since 2009, IPI responder

                                                  • August 5, 2016 at 1:18 pm
                                                  LizaC
                                                  Participant
                                                    Hi Rocca,
                                                    My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
                                                    • August 5, 2016 at 1:18 pm
                                                    LizaC
                                                    Participant
                                                      Hi Rocca,
                                                      My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
                                                      • August 5, 2016 at 1:18 pm
                                                      LizaC
                                                      Participant
                                                        Hi Rocca,
                                                        My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
                                                      • July 22, 2016 at 3:56 am
                                                      Rocco
                                                      Participant

                                                        Hi Jewel,

                                                        I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

                                                        -Rocco

                                                        Stage IV in 2005, NED since 2009, IPI responder

                                                    Viewing 11 reply threads
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