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Ipi Success Stories?

Forums General Melanoma Community Ipi Success Stories?

  • Post
    Mat
    Participant

      I've poked around using the MPIP "search" function.  I'm not finding many ipi success stories (other than Jerry from Cape Cod).  Maybe a question for the old timers, but can you recall situations where the patients have had the standard FDA-approved course of ipi (4 infusions) and got great results?  Maybe all of those folks have left their melanoma lives behind and no longer post here?

    Viewing 11 reply threads
    • Replies
        SBeattie
        Participant

          Was wondering the same 'thing'…

          SBeattie
          Participant

            Was wondering the same 'thing'…

            SBeattie
            Participant

              Was wondering the same 'thing'…

                willtolive
                Participant

                  Hi there!

                  Well, my wife is a very good story πŸ™‚

                  Please read her story in my profile!

                  The short version: she was a stage 4 patient with multiple lung mets, and received ipilimumab. After 4 infusions and a PET/CT scan, she was declared a complete responder!! And still is 2,5 years after πŸ™‚

                  willtolive
                  Participant

                    Hi there!

                    Well, my wife is a very good story πŸ™‚

                    Please read her story in my profile!

                    The short version: she was a stage 4 patient with multiple lung mets, and received ipilimumab. After 4 infusions and a PET/CT scan, she was declared a complete responder!! And still is 2,5 years after πŸ™‚

                    willtolive
                    Participant

                      Hi there!

                      Well, my wife is a very good story πŸ™‚

                      Please read her story in my profile!

                      The short version: she was a stage 4 patient with multiple lung mets, and received ipilimumab. After 4 infusions and a PET/CT scan, she was declared a complete responder!! And still is 2,5 years after πŸ™‚

                      Mat
                      Participant

                        Thanks so much–she is "livin' the dream" as far as I'm concerned!

                        Mat
                        Participant

                          Thanks so much–she is "livin' the dream" as far as I'm concerned!

                          Mat
                          Participant

                            Thanks so much–she is "livin' the dream" as far as I'm concerned!

                          kpcollins31
                          Participant

                            Very good question… I was recently talking to a melanoma treatment coordinator about an upcoming appointment and we got into some discussion around next steps if it turns out I have a recurrence that moves me to stage 4. I made a comment about not really having any good treatment options available other than clinical trials and that drew a rebuke. She specifically cited a lot of success with ipi and indicated that I should not rule that out. It would be interesting to see updated statistics on the effectiveness of ipi.

                            Kevin

                             

                            kpcollins31
                            Participant

                              Very good question… I was recently talking to a melanoma treatment coordinator about an upcoming appointment and we got into some discussion around next steps if it turns out I have a recurrence that moves me to stage 4. I made a comment about not really having any good treatment options available other than clinical trials and that drew a rebuke. She specifically cited a lot of success with ipi and indicated that I should not rule that out. It would be interesting to see updated statistics on the effectiveness of ipi.

                              Kevin

                               

                              kpcollins31
                              Participant

                                Very good question… I was recently talking to a melanoma treatment coordinator about an upcoming appointment and we got into some discussion around next steps if it turns out I have a recurrence that moves me to stage 4. I made a comment about not really having any good treatment options available other than clinical trials and that drew a rebuke. She specifically cited a lot of success with ipi and indicated that I should not rule that out. It would be interesting to see updated statistics on the effectiveness of ipi.

                                Kevin

                                 

                                Gene_S
                                Participant

                                  My husband was on Ipi for 2 years and 8 months on a clinical trial.  But in the first 12 weeks with the 4 doses we saw shrinkage of the skin lesions that were visible.  He was stage IV and you can read his story on his profile if interested.  He has been NED (no evidence of disease) for 15 months now.  He had lesions in his liver, lungs and an unresectable one on his spine at the cervical spine.  (unresectable because with surgery it would have left him paralyzed).

                                  Judy (lving wife of Gene Stage IV and now NED)

                                  Gene_S
                                  Participant

                                    My husband was on Ipi for 2 years and 8 months on a clinical trial.  But in the first 12 weeks with the 4 doses we saw shrinkage of the skin lesions that were visible.  He was stage IV and you can read his story on his profile if interested.  He has been NED (no evidence of disease) for 15 months now.  He had lesions in his liver, lungs and an unresectable one on his spine at the cervical spine.  (unresectable because with surgery it would have left him paralyzed).

                                    Judy (lving wife of Gene Stage IV and now NED)

                                    Gene_S
                                    Participant

                                      My husband was on Ipi for 2 years and 8 months on a clinical trial.  But in the first 12 weeks with the 4 doses we saw shrinkage of the skin lesions that were visible.  He was stage IV and you can read his story on his profile if interested.  He has been NED (no evidence of disease) for 15 months now.  He had lesions in his liver, lungs and an unresectable one on his spine at the cervical spine.  (unresectable because with surgery it would have left him paralyzed).

                                      Judy (lving wife of Gene Stage IV and now NED)

                                        SBeattie
                                        Participant

                                          Thank you all for these inspiring 'stories'…

                                          SBeattie
                                          Participant

                                            Thank you all for these inspiring 'stories'…

                                            SBeattie
                                            Participant

                                              Thank you all for these inspiring 'stories'…

                                              G-Samsa
                                              Participant

                                                I had a similar question for my doctors at MSKCC in New York.  My Stage 4 melanoma is at a stalemate with the Nivo/Ipi I am being treated with.  I've had reduction in tumor burden (partial response)  but not NED.  I have been stable now for nearly a year– and have asked (as I near the point where I will shuffle out onto the thin ice post maintenance) about durability.   The response from the physicians has been that once the immune system is trained it can keep the melanoma in-check for long periods of time if not indefinitely.  They have cited patients in their care who are going on SEVEN years after becoming stable using Ipi alone.  That's seven years and counting!

                                                G-Samsa
                                                Participant

                                                  I had a similar question for my doctors at MSKCC in New York.  My Stage 4 melanoma is at a stalemate with the Nivo/Ipi I am being treated with.  I've had reduction in tumor burden (partial response)  but not NED.  I have been stable now for nearly a year– and have asked (as I near the point where I will shuffle out onto the thin ice post maintenance) about durability.   The response from the physicians has been that once the immune system is trained it can keep the melanoma in-check for long periods of time if not indefinitely.  They have cited patients in their care who are going on SEVEN years after becoming stable using Ipi alone.  That's seven years and counting!

                                                  G-Samsa
                                                  Participant

                                                    I had a similar question for my doctors at MSKCC in New York.  My Stage 4 melanoma is at a stalemate with the Nivo/Ipi I am being treated with.  I've had reduction in tumor burden (partial response)  but not NED.  I have been stable now for nearly a year– and have asked (as I near the point where I will shuffle out onto the thin ice post maintenance) about durability.   The response from the physicians has been that once the immune system is trained it can keep the melanoma in-check for long periods of time if not indefinitely.  They have cited patients in their care who are going on SEVEN years after becoming stable using Ipi alone.  That's seven years and counting!

                                                    meldad
                                                    Participant

                                                      How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                      Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                      meldad
                                                      Participant

                                                        How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                        Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                        meldad
                                                        Participant

                                                          How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                          Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                          meldad
                                                          Participant

                                                            How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                            Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                            meldad
                                                            Participant

                                                              How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                              Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                              arthurjedi007
                                                              Participant

                                                                I have only talked to 1 person who took ipi. He was in the trial and has 2 non growing small tumors after almost 4 years. So it gives me hope with my 4th ipi dose being next monday.

                                                                My Dr said if I do progress on ipi there is a trial of PD1 for those who progress on ipi. But they said that over 5 weeks ago so I dunno if that is still an option but I assume so or why would they say it knowing my ipi schedule. I also do not know which PD1 med that is for.

                                                                arthurjedi007
                                                                Participant

                                                                  I have only talked to 1 person who took ipi. He was in the trial and has 2 non growing small tumors after almost 4 years. So it gives me hope with my 4th ipi dose being next monday.

                                                                  My Dr said if I do progress on ipi there is a trial of PD1 for those who progress on ipi. But they said that over 5 weeks ago so I dunno if that is still an option but I assume so or why would they say it knowing my ipi schedule. I also do not know which PD1 med that is for.

                                                                  Erinmay22
                                                                  Participant

                                                                    I took 4 doses of ipi last year (Sept-Nov 2012).  at 12 week scans in Dec 2012, I had an increase in tumors (nothing new) but in Jan 2013 when I had scans to get in to Merck's clinical for PD1, I had shrinkage.   I'd like to think that ipi was working for me prior to starting the pd1.  

                                                                    Tomorrow will mark dose #18 of merck's anti-pd1.  My scans continue to show shrinking/stable/nothing new.   I am being treated at MSKCC.  I have asked if it's possible that 

                                                                    Also should note that I had minimal side effects with ipi.  I know we are always looking for some sort of 'sign' that it's working for us!

                                                                    Erinmay22
                                                                    Participant

                                                                      I took 4 doses of ipi last year (Sept-Nov 2012).  at 12 week scans in Dec 2012, I had an increase in tumors (nothing new) but in Jan 2013 when I had scans to get in to Merck's clinical for PD1, I had shrinkage.   I'd like to think that ipi was working for me prior to starting the pd1.  

                                                                      Tomorrow will mark dose #18 of merck's anti-pd1.  My scans continue to show shrinking/stable/nothing new.   I am being treated at MSKCC.  I have asked if it's possible that 

                                                                      Also should note that I had minimal side effects with ipi.  I know we are always looking for some sort of 'sign' that it's working for us!

                                                                      Erinmay22
                                                                      Participant

                                                                        I took 4 doses of ipi last year (Sept-Nov 2012).  at 12 week scans in Dec 2012, I had an increase in tumors (nothing new) but in Jan 2013 when I had scans to get in to Merck's clinical for PD1, I had shrinkage.   I'd like to think that ipi was working for me prior to starting the pd1.  

                                                                        Tomorrow will mark dose #18 of merck's anti-pd1.  My scans continue to show shrinking/stable/nothing new.   I am being treated at MSKCC.  I have asked if it's possible that 

                                                                        Also should note that I had minimal side effects with ipi.  I know we are always looking for some sort of 'sign' that it's working for us!

                                                                        arthurjedi007
                                                                        Participant

                                                                          I have only talked to 1 person who took ipi. He was in the trial and has 2 non growing small tumors after almost 4 years. So it gives me hope with my 4th ipi dose being next monday.

                                                                          My Dr said if I do progress on ipi there is a trial of PD1 for those who progress on ipi. But they said that over 5 weeks ago so I dunno if that is still an option but I assume so or why would they say it knowing my ipi schedule. I also do not know which PD1 med that is for.

                                                                          meldad
                                                                          Participant

                                                                            How long after you finished ipi did you see a response? My dad finished ipi end of November and the first scans showed 80% had shrunk but 20% was still growing. 

                                                                            Hes latest scans show growth again! I just don't understand the first set of scans, how they could have changed so much. The Doctors are basically saying there's nothing left to try! 

                                                                          buffcody
                                                                          Participant

                                                                            Personal experience.  Started ipi October 2012.  SRS for two brain tumors in December 2012.  No other melanoma.  Had had lung metastisis removed by resection in July 2012.  SRS was successful in killing 2 brain tumors.  An apperance of a sub-q deep in buttock in April.  NED since.  My oncologist attributes my condition to the ipi and the combination of ipi and brain SRS,  I recently came up with a less desirable possible side effect of the ipi, Graves disease, hyperthyroidism.  Side effects from ipi may come on long after the treatment.  But Graves is treatable.

                                                                             

                                                                            Frank

                                                                            buffcody
                                                                            Participant

                                                                              Personal experience.  Started ipi October 2012.  SRS for two brain tumors in December 2012.  No other melanoma.  Had had lung metastisis removed by resection in July 2012.  SRS was successful in killing 2 brain tumors.  An apperance of a sub-q deep in buttock in April.  NED since.  My oncologist attributes my condition to the ipi and the combination of ipi and brain SRS,  I recently came up with a less desirable possible side effect of the ipi, Graves disease, hyperthyroidism.  Side effects from ipi may come on long after the treatment.  But Graves is treatable.

                                                                               

                                                                              Frank

                                                                              buffcody
                                                                              Participant

                                                                                Personal experience.  Started ipi October 2012.  SRS for two brain tumors in December 2012.  No other melanoma.  Had had lung metastisis removed by resection in July 2012.  SRS was successful in killing 2 brain tumors.  An apperance of a sub-q deep in buttock in April.  NED since.  My oncologist attributes my condition to the ipi and the combination of ipi and brain SRS,  I recently came up with a less desirable possible side effect of the ipi, Graves disease, hyperthyroidism.  Side effects from ipi may come on long after the treatment.  But Graves is treatable.

                                                                                 

                                                                                Frank

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