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Good news

Forums General Melanoma Community Good news

  • Post
    Marianne quinn
    Participant

      My husband just had another great CAT scan. Still NED! What is so wonderful is that 2 years ago, he was diagnosed with a small metastasis to his liver. He was in the interferon vs. ipi trial for stage 3C. He had 4 infusions of 10 mg ipi and had tolerated it reasonably well. He was removed from the clinical trial ( he was supposed to get 4 maintenence doses)., basically a clinical "failure". He then had microwave ablation surgery and then became NED. 2 years ago, we thought  he only had months. Now we know he is a "durable responder". We are lucky.

      What bothers me a bit, is when the study results come out, it will not reflect that the Yervoy worked. Also, it was a bit disappointing that after being followed so closely during the trial and giving at least 50 vials of blood, that he was dropped like a hot potato from the support from the clinical trial researchers. I think there is valueable information to be gleaned from him. It is really a shame for other melanoma patients. One of the reasons he joined a clinical trial was to help others.

      Keep up the good fight. There is hope.

       

       

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant

          Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro:    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

          One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy!  Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html

          For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c

          Bubbles
          Participant

            Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro:    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

            One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy!  Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html

            For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c

            Bubbles
            Participant

              Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro:    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html

              One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy!  Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html

              For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c

              JoshF
              Participant

                Love great news!!!!

                JoshF
                Participant

                  Love great news!!!!

                  JoshF
                  Participant

                    Love great news!!!!

                    katie1
                    Participant

                      Hi Maranne,

                      great news. 

                      Kate

                      katie1
                      Participant

                        Hi Maranne,

                        great news. 

                        Kate

                        katie1
                        Participant

                          Hi Maranne,

                          great news. 

                          Kate

                          AshleyS
                          Participant

                            Hi Marianne,

                            I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health. 

                            Ashley

                            AshleyS
                            Participant

                              Hi Marianne,

                              I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health. 

                              Ashley

                              AshleyS
                              Participant

                                Hi Marianne,

                                I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health. 

                                Ashley

                                DZnDef
                                Participant

                                  Marianne!  Thank you so much for sharing such wonderful news with us!  Yes, there definitely is hope.  I am delighted for you and your husband.

                                  DZnDef
                                  Participant

                                    Marianne!  Thank you so much for sharing such wonderful news with us!  Yes, there definitely is hope.  I am delighted for you and your husband.

                                    DZnDef
                                    Participant

                                      Marianne!  Thank you so much for sharing such wonderful news with us!  Yes, there definitely is hope.  I am delighted for you and your husband.

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