MRF-Logo2019-Horizontal-RGB
5 year Anniversary
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

5 year Anniversary

› Forums › General Melanoma Community › 5 year Anniversary

  • Post
    • March 4, 2016 at 3:04 pm
    Gene_S
    Participant

      5 years ago my husband who had just became Stage IV started the Clinical Trial of (IPI) Yervoy 10mg/kg and GM-CSF.  We had the 5 year appointment yesterday with the oncologist and he has been NED for almost 3 1/2 years.

      There were 12 or 13 people in this Trial at University Hospital in Cleveland, OH and 4 of them are doing good still.

      If you would like to read about his journey with melanoma and the trial you can check out his profile.

      Judy loving wife of Gene Stage IV and now NED

    Viewing 35 reply threads
    • Replies
        • March 4, 2016 at 3:54 pm
        BrianP
        Participant

          Thanks for sharing Judy.  Congrats. 

          Doesn't appear as though the GM-CSF had that much added benefit to Ipi alone.  Is that your takeaway as well?

            • March 4, 2016 at 8:31 pm
            Gene_S
            Participant

              The GM-CSF really helps build the immune system and has been used for over 25 years for some other cancers and this was I believe the first time the used it in conjunction with Ipi for Melanoma.  Also Ipi became Yervoy and was approved by the FDA on March 26, 2011 at the 3 mg/kg so in my opinion they were pushing for the Ipi alone because this they hadn't figured out if it would help and then they had so many other new drugs they were doing trials on.  He started his trial on March 3 just before FDA approved it.

              Judy

              • March 4, 2016 at 8:31 pm
              Gene_S
              Participant

                The GM-CSF really helps build the immune system and has been used for over 25 years for some other cancers and this was I believe the first time the used it in conjunction with Ipi for Melanoma.  Also Ipi became Yervoy and was approved by the FDA on March 26, 2011 at the 3 mg/kg so in my opinion they were pushing for the Ipi alone because this they hadn't figured out if it would help and then they had so many other new drugs they were doing trials on.  He started his trial on March 3 just before FDA approved it.

                Judy

                • March 4, 2016 at 8:31 pm
                Gene_S
                Participant

                  The GM-CSF really helps build the immune system and has been used for over 25 years for some other cancers and this was I believe the first time the used it in conjunction with Ipi for Melanoma.  Also Ipi became Yervoy and was approved by the FDA on March 26, 2011 at the 3 mg/kg so in my opinion they were pushing for the Ipi alone because this they hadn't figured out if it would help and then they had so many other new drugs they were doing trials on.  He started his trial on March 3 just before FDA approved it.

                  Judy

                  • March 5, 2016 at 8:52 pm
                  BrianP
                  Participant

                    Thanks Judy.  Hope my question didn't offend.  Just for my own knowledge I was curious if the investigators thought the GM-CSF helped.  I think if you treated 12 or 13 stage IVers with Ipi alone you'd probably also have pretty close to 4 still doing well.

                    Brian

                    • March 5, 2016 at 8:52 pm
                    BrianP
                    Participant

                      Thanks Judy.  Hope my question didn't offend.  Just for my own knowledge I was curious if the investigators thought the GM-CSF helped.  I think if you treated 12 or 13 stage IVers with Ipi alone you'd probably also have pretty close to 4 still doing well.

                      Brian

                      • March 5, 2016 at 8:52 pm
                      BrianP
                      Participant

                        Thanks Judy.  Hope my question didn't offend.  Just for my own knowledge I was curious if the investigators thought the GM-CSF helped.  I think if you treated 12 or 13 stage IVers with Ipi alone you'd probably also have pretty close to 4 still doing well.

                        Brian

                        • March 6, 2016 at 3:15 pm
                        Gene_S
                        Participant

                          A reply below from WITom is also NED and only took the IPI  and has been NED for over 3 years as well.  So you may be right Brian.

                          Judy

                          • March 6, 2016 at 3:15 pm
                          Gene_S
                          Participant

                            A reply below from WITom is also NED and only took the IPI  and has been NED for over 3 years as well.  So you may be right Brian.

                            Judy

                            • March 6, 2016 at 3:15 pm
                            Gene_S
                            Participant

                              A reply below from WITom is also NED and only took the IPI  and has been NED for over 3 years as well.  So you may be right Brian.

                              Judy

                            • March 4, 2016 at 3:54 pm
                            BrianP
                            Participant

                              Thanks for sharing Judy.  Congrats. 

                              Doesn't appear as though the GM-CSF had that much added benefit to Ipi alone.  Is that your takeaway as well?

                              • March 4, 2016 at 3:54 pm
                              BrianP
                              Participant

                                Thanks for sharing Judy.  Congrats. 

                                Doesn't appear as though the GM-CSF had that much added benefit to Ipi alone.  Is that your takeaway as well?

                                • March 4, 2016 at 6:10 pm
                                sweetaugust
                                Participant

                                  Congrats Gene and Judy!  Great news!!!

                                  • March 4, 2016 at 6:10 pm
                                  sweetaugust
                                  Participant

                                    Congrats Gene and Judy!  Great news!!!

                                    • March 4, 2016 at 6:10 pm
                                    sweetaugust
                                    Participant

                                      Congrats Gene and Judy!  Great news!!!

                                      • March 4, 2016 at 8:00 pm
                                      Gwen in Maine
                                      Participant

                                        Congratulations to the both of you. Wonderful news!

                                        Gwen

                                        • March 4, 2016 at 8:00 pm
                                        Gwen in Maine
                                        Participant

                                          Congratulations to the both of you. Wonderful news!

                                          Gwen

                                          • March 4, 2016 at 8:00 pm
                                          Gwen in Maine
                                          Participant

                                            Congratulations to the both of you. Wonderful news!

                                            Gwen

                                            • March 4, 2016 at 8:30 pm
                                            DZnDef
                                            Participant

                                              I am very happy for you both!  I wish you continued success!  And thanks so much for checking in and giving us the update.  I find all updates to be valuable and informative but, of course, I absolutely love updates like this one!

                                              • March 4, 2016 at 8:30 pm
                                              DZnDef
                                              Participant

                                                I am very happy for you both!  I wish you continued success!  And thanks so much for checking in and giving us the update.  I find all updates to be valuable and informative but, of course, I absolutely love updates like this one!

                                                • March 4, 2016 at 8:30 pm
                                                DZnDef
                                                Participant

                                                  I am very happy for you both!  I wish you continued success!  And thanks so much for checking in and giving us the update.  I find all updates to be valuable and informative but, of course, I absolutely love updates like this one!

                                                  • March 5, 2016 at 1:45 am
                                                  Eileensulliv
                                                  Participant

                                                    What a wonderful post! So happy for you both! Thank you for sharing!

                                                    • March 5, 2016 at 1:45 am
                                                    Eileensulliv
                                                    Participant

                                                      What a wonderful post! So happy for you both! Thank you for sharing!

                                                      • March 5, 2016 at 1:45 am
                                                      Eileensulliv
                                                      Participant

                                                        What a wonderful post! So happy for you both! Thank you for sharing!

                                                        • March 5, 2016 at 1:48 am
                                                        Bubbles
                                                        Participant

                                                          Wonderful news, Gene and Judy! Keep it going! Celeste

                                                          • March 5, 2016 at 1:48 am
                                                          Bubbles
                                                          Participant

                                                            Wonderful news, Gene and Judy! Keep it going! Celeste

                                                            • March 5, 2016 at 1:48 am
                                                            Bubbles
                                                            Participant

                                                              Wonderful news, Gene and Judy! Keep it going! Celeste

                                                              • March 5, 2016 at 1:49 am
                                                              jennunicorn
                                                              Participant

                                                                Great news, thanks for sharing!

                                                                • March 5, 2016 at 1:49 am
                                                                jennunicorn
                                                                Participant

                                                                  Great news, thanks for sharing!

                                                                  • March 5, 2016 at 1:49 am
                                                                  jennunicorn
                                                                  Participant

                                                                    Great news, thanks for sharing!

                                                                    • March 5, 2016 at 11:47 am
                                                                    Teej
                                                                    Participant

                                                                      So great to hear! Happy for you both!

                                                                      Teej

                                                                      • March 5, 2016 at 11:47 am
                                                                      Teej
                                                                      Participant

                                                                        So great to hear! Happy for you both!

                                                                        Teej

                                                                        • March 5, 2016 at 11:47 am
                                                                        Teej
                                                                        Participant

                                                                          So great to hear! Happy for you both!

                                                                          Teej

                                                                            • March 5, 2016 at 5:43 pm
                                                                            Brendan
                                                                            Participant

                                                                              Congratulations!  Thanks for sharing. Wishing you continued good luck.

                                                                              Brendan

                                                                              • March 5, 2016 at 5:43 pm
                                                                              Brendan
                                                                              Participant

                                                                                Congratulations!  Thanks for sharing. Wishing you continued good luck.

                                                                                Brendan

                                                                                • March 5, 2016 at 5:43 pm
                                                                                Brendan
                                                                                Participant

                                                                                  Congratulations!  Thanks for sharing. Wishing you continued good luck.

                                                                                  Brendan

                                                                                • March 6, 2016 at 1:29 pm
                                                                                WITom
                                                                                Participant

                                                                                  Congratulations Gene and Judy!!  I'm always interested in your posts and progress as our stories are very similar in many ways. I started the same trial shortly after becoming stage 4 in May of 11' I believe about 2 months after you did (I was ipi only arm). I too have been NED for 3.5 years. I will hopefully reach the 5 year milestone this May.  Congratulations again – we are so blessed to be ipi responders!

                                                                                  Tom

                                                                                  • March 6, 2016 at 1:29 pm
                                                                                  WITom
                                                                                  Participant

                                                                                    Congratulations Gene and Judy!!  I'm always interested in your posts and progress as our stories are very similar in many ways. I started the same trial shortly after becoming stage 4 in May of 11' I believe about 2 months after you did (I was ipi only arm). I too have been NED for 3.5 years. I will hopefully reach the 5 year milestone this May.  Congratulations again – we are so blessed to be ipi responders!

                                                                                    Tom

                                                                                    • March 6, 2016 at 1:29 pm
                                                                                    WITom
                                                                                    Participant

                                                                                      Congratulations Gene and Judy!!  I'm always interested in your posts and progress as our stories are very similar in many ways. I started the same trial shortly after becoming stage 4 in May of 11' I believe about 2 months after you did (I was ipi only arm). I too have been NED for 3.5 years. I will hopefully reach the 5 year milestone this May.  Congratulations again – we are so blessed to be ipi responders!

                                                                                      Tom

                                                                                      • March 6, 2016 at 3:13 pm
                                                                                      Gene_S
                                                                                      Participant

                                                                                        Thank you all.  I hope and pray all  of you reach this status as well in whatever treatments you are taking.  It has sure been a blessing to us especially since after Gene's NED status our daughter was diagnosed with colon cancer and cancer of the peritoneum.  She fought for a year and passed last July.

                                                                                          • March 6, 2016 at 9:38 pm
                                                                                          Gwen in Maine
                                                                                          Participant

                                                                                            Oh, Judy. I'm so sorry. What trials your family has gone through…

                                                                                            Gwen

                                                                                            • March 6, 2016 at 9:38 pm
                                                                                            Gwen in Maine
                                                                                            Participant

                                                                                              Oh, Judy. I'm so sorry. What trials your family has gone through…

                                                                                              Gwen

                                                                                              • March 6, 2016 at 9:38 pm
                                                                                              Gwen in Maine
                                                                                              Participant

                                                                                                Oh, Judy. I'm so sorry. What trials your family has gone through…

                                                                                                Gwen

                                                                                              • March 6, 2016 at 3:13 pm
                                                                                              Gene_S
                                                                                              Participant

                                                                                                Thank you all.  I hope and pray all  of you reach this status as well in whatever treatments you are taking.  It has sure been a blessing to us especially since after Gene's NED status our daughter was diagnosed with colon cancer and cancer of the peritoneum.  She fought for a year and passed last July.

                                                                                                • March 6, 2016 at 3:13 pm
                                                                                                Gene_S
                                                                                                Participant

                                                                                                  Thank you all.  I hope and pray all  of you reach this status as well in whatever treatments you are taking.  It has sure been a blessing to us especially since after Gene's NED status our daughter was diagnosed with colon cancer and cancer of the peritoneum.  She fought for a year and passed last July.

                                                                                                  • March 6, 2016 at 8:28 pm
                                                                                                  kpcollins31
                                                                                                  Participant

                                                                                                    Great news – congratulations!

                                                                                                    Kevin

                                                                                                    • March 6, 2016 at 8:28 pm
                                                                                                    kpcollins31
                                                                                                    Participant

                                                                                                      Great news – congratulations!

                                                                                                      Kevin

                                                                                                      • March 6, 2016 at 8:28 pm
                                                                                                      kpcollins31
                                                                                                      Participant

                                                                                                        Great news – congratulations!

                                                                                                        Kevin

                                                                                                        • March 7, 2016 at 10:48 am
                                                                                                        Scooby123
                                                                                                        Participant

                                                                                                          Congratulations Gene S so pleased for you both. Nice to have good positive news on hope that we all will get that magic treatment that beats this disease for all.

                                                                                                          Scooby123

                                                                                                          • March 7, 2016 at 10:48 am
                                                                                                          Scooby123
                                                                                                          Participant

                                                                                                            Congratulations Gene S so pleased for you both. Nice to have good positive news on hope that we all will get that magic treatment that beats this disease for all.

                                                                                                            Scooby123

                                                                                                            • March 7, 2016 at 10:48 am
                                                                                                            Scooby123
                                                                                                            Participant

                                                                                                              Congratulations Gene S so pleased for you both. Nice to have good positive news on hope that we all will get that magic treatment that beats this disease for all.

                                                                                                              Scooby123

                                                                                                          Viewing 35 reply threads
                                                                                                          • You must be logged in to reply to this topic.
                                                                                                          About the MRF Patient Forum

                                                                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                                                          Popular Topics