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Stage 3 one month ago
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Stage 3 one month ago

› Forums › General Melanoma Community › Stage 3 one month ago

  • Post
    • September 17, 2015 at 3:25 am
    Debbieamccoy
    Participant

      4 weeks ago all my scans were clear to day a MRI showed probable mets to liver after first dose of yervoy 3,weeks ago I am so upset and discouraged any and all advice 

    Viewing 5 reply threads
    • Replies
        • September 17, 2015 at 2:00 pm
        mkirkland
        Participant

          I am so sorry to hear this for you! Stay strong and positive! I know it's easier said than done! What is your original diagnosis/timeline? 

            • September 17, 2015 at 3:13 pm
            Debbieamccoy
            Participant

              DX 3 b 5/15 all scans clear for first 2 started yervoy and 2 weeks later have spots on my liver 

              • September 17, 2015 at 5:19 pm
              mkirkland
              Participant

                If u don't mind me asking – did u do the lymph node dissection? 

                • September 17, 2015 at 5:19 pm
                mkirkland
                Participant

                  If u don't mind me asking – did u do the lymph node dissection? 

                  • September 17, 2015 at 5:19 pm
                  mkirkland
                  Participant

                    If u don't mind me asking – did u do the lymph node dissection? 

                    • September 17, 2015 at 3:13 pm
                    Debbieamccoy
                    Participant

                      DX 3 b 5/15 all scans clear for first 2 started yervoy and 2 weeks later have spots on my liver 

                      • September 17, 2015 at 3:13 pm
                      Debbieamccoy
                      Participant

                        DX 3 b 5/15 all scans clear for first 2 started yervoy and 2 weeks later have spots on my liver 

                      • September 17, 2015 at 2:00 pm
                      mkirkland
                      Participant

                        I am so sorry to hear this for you! Stay strong and positive! I know it's easier said than done! What is your original diagnosis/timeline? 

                        • September 17, 2015 at 2:00 pm
                        mkirkland
                        Participant

                          I am so sorry to hear this for you! Stay strong and positive! I know it's easier said than done! What is your original diagnosis/timeline? 

                          • September 17, 2015 at 3:17 pm
                          Never Gonna Stop
                          Participant

                            Sorry to hear that you've progressed. Have you looked into trials for PD-1 or PD-L1 inhibitors? Sounds like you fit the definition of "failing" Yervoy, and I would think some new doors would be opened up for you in trials.

                            Know that there's always hope, though!

                            • September 17, 2015 at 3:17 pm
                            Never Gonna Stop
                            Participant

                              Sorry to hear that you've progressed. Have you looked into trials for PD-1 or PD-L1 inhibitors? Sounds like you fit the definition of "failing" Yervoy, and I would think some new doors would be opened up for you in trials.

                              Know that there's always hope, though!

                                • September 18, 2015 at 4:02 pm
                                Debbieamccoy
                                Participant

                                  I had a CLND with no evidence of melanoma. Yesterday I was told I had autoimmune hepatitis which based on my labs but we are waiting biopsy results . My. Enzymes continue to decline and my other labs are normal. My dr hasn't decide if he is taking me off Yervoy . I'll keep you posted 

                                  • September 18, 2015 at 4:02 pm
                                  Debbieamccoy
                                  Participant

                                    I had a CLND with no evidence of melanoma. Yesterday I was told I had autoimmune hepatitis which based on my labs but we are waiting biopsy results . My. Enzymes continue to decline and my other labs are normal. My dr hasn't decide if he is taking me off Yervoy . I'll keep you posted 

                                    • September 18, 2015 at 10:27 pm
                                    mkirkland
                                    Participant

                                      Bless you!! Please keep us posted in your progress! Sending prayers! 

                                      • September 18, 2015 at 10:27 pm
                                      mkirkland
                                      Participant

                                        Bless you!! Please keep us posted in your progress! Sending prayers! 

                                        • September 18, 2015 at 10:27 pm
                                        mkirkland
                                        Participant

                                          Bless you!! Please keep us posted in your progress! Sending prayers! 

                                          • September 18, 2015 at 4:02 pm
                                          Debbieamccoy
                                          Participant

                                            I had a CLND with no evidence of melanoma. Yesterday I was told I had autoimmune hepatitis which based on my labs but we are waiting biopsy results . My. Enzymes continue to decline and my other labs are normal. My dr hasn't decide if he is taking me off Yervoy . I'll keep you posted 

                                            • September 18, 2015 at 7:32 pm
                                            ed williams
                                            Participant

                                              Never Gonna Stop, please be careful when giving advice about Yervoy!!!! The reason that we have the drug today  in part is due to Oncologist that didn't stop giving it. In early trials patients had scans that looked worse before they eventually got better. Dr. Jedd Wolchok of Memorial Sloan Kettering who is one of the leading Oncologist in the Melanoma field has stated this finding of delayed response with Ipi many times when giving lectures to other Oncologist about how to manage the side effects of Yervoy and how the drug works!!! The most important advice that we can give to new Melanoma patients is to seek out a Oncologist that is a specialist in Melanoma.

                                              • September 18, 2015 at 7:32 pm
                                              ed williams
                                              Participant

                                                Never Gonna Stop, please be careful when giving advice about Yervoy!!!! The reason that we have the drug today  in part is due to Oncologist that didn't stop giving it. In early trials patients had scans that looked worse before they eventually got better. Dr. Jedd Wolchok of Memorial Sloan Kettering who is one of the leading Oncologist in the Melanoma field has stated this finding of delayed response with Ipi many times when giving lectures to other Oncologist about how to manage the side effects of Yervoy and how the drug works!!! The most important advice that we can give to new Melanoma patients is to seek out a Oncologist that is a specialist in Melanoma.

                                                • September 18, 2015 at 8:22 pm
                                                Never Gonna Stop
                                                Participant

                                                  Good information, thanks. Was not aware of that!

                                                  • September 18, 2015 at 8:22 pm
                                                  Never Gonna Stop
                                                  Participant

                                                    Good information, thanks. Was not aware of that!

                                                    • September 18, 2015 at 8:22 pm
                                                    Never Gonna Stop
                                                    Participant

                                                      Good information, thanks. Was not aware of that!

                                                      • September 18, 2015 at 9:30 pm
                                                      Debbieamccoy
                                                      Participant

                                                        I've heard the same thing from other oncologist , they are certain the yervoy caused the hepatitis now to decide to continue with yervoy and go on prednisone if that's possiblev

                                                        • September 18, 2015 at 9:30 pm
                                                        Debbieamccoy
                                                        Participant

                                                          I've heard the same thing from other oncologist , they are certain the yervoy caused the hepatitis now to decide to continue with yervoy and go on prednisone if that's possiblev

                                                          • September 19, 2015 at 7:47 am
                                                          Ninniditti
                                                          Participant

                                                            I too got hepatitis after one dose of yervoy. I had to stay in hospital for two weeks and got a huge amount of prednisol (160 mg daily). I was told I never ever could have any kind of immunoterapi again. I was on chemo for one year and the tumor kept steady. Then I changed oncologist and she let me try pembro. I have no side effects and have had 3 doses. Good luck!

                                                            • September 19, 2015 at 4:39 pm
                                                            Debbieamccoy
                                                            Participant

                                                              I'm hoping the liver biopsy doesn't show mets , just one worry after another. I'm scared and angry. I will keep you posted 

                                                              • September 20, 2015 at 7:57 pm
                                                              Debbieamccoy
                                                              Participant

                                                                My biopsy came back positive for liver mets. I refuse to give up. I start Keytruda this week

                                                                • September 22, 2015 at 2:24 am
                                                                BrianP
                                                                Participant

                                                                  Sorry to hear that.  You have a lot of reason to be optimistic about Keytruda.  Myself and many on here have done great on Keytruda and Opdivo.  Hang in there.

                                                                  • September 22, 2015 at 2:24 am
                                                                  BrianP
                                                                  Participant

                                                                    Sorry to hear that.  You have a lot of reason to be optimistic about Keytruda.  Myself and many on here have done great on Keytruda and Opdivo.  Hang in there.

                                                                    • September 22, 2015 at 2:24 am
                                                                    BrianP
                                                                    Participant

                                                                      Sorry to hear that.  You have a lot of reason to be optimistic about Keytruda.  Myself and many on here have done great on Keytruda and Opdivo.  Hang in there.

                                                                      • September 20, 2015 at 7:57 pm
                                                                      Debbieamccoy
                                                                      Participant

                                                                        My biopsy came back positive for liver mets. I refuse to give up. I start Keytruda this week

                                                                        • September 20, 2015 at 7:57 pm
                                                                        Debbieamccoy
                                                                        Participant

                                                                          My biopsy came back positive for liver mets. I refuse to give up. I start Keytruda this week

                                                                          • September 19, 2015 at 4:39 pm
                                                                          Debbieamccoy
                                                                          Participant

                                                                            I'm hoping the liver biopsy doesn't show mets , just one worry after another. I'm scared and angry. I will keep you posted 

                                                                            • September 19, 2015 at 4:39 pm
                                                                            Debbieamccoy
                                                                            Participant

                                                                              I'm hoping the liver biopsy doesn't show mets , just one worry after another. I'm scared and angry. I will keep you posted 

                                                                              • September 19, 2015 at 7:47 am
                                                                              Ninniditti
                                                                              Participant

                                                                                I too got hepatitis after one dose of yervoy. I had to stay in hospital for two weeks and got a huge amount of prednisol (160 mg daily). I was told I never ever could have any kind of immunoterapi again. I was on chemo for one year and the tumor kept steady. Then I changed oncologist and she let me try pembro. I have no side effects and have had 3 doses. Good luck!

                                                                                • September 19, 2015 at 7:47 am
                                                                                Ninniditti
                                                                                Participant

                                                                                  I too got hepatitis after one dose of yervoy. I had to stay in hospital for two weeks and got a huge amount of prednisol (160 mg daily). I was told I never ever could have any kind of immunoterapi again. I was on chemo for one year and the tumor kept steady. Then I changed oncologist and she let me try pembro. I have no side effects and have had 3 doses. Good luck!

                                                                                  • September 18, 2015 at 9:30 pm
                                                                                  Debbieamccoy
                                                                                  Participant

                                                                                    I've heard the same thing from other oncologist , they are certain the yervoy caused the hepatitis now to decide to continue with yervoy and go on prednisone if that's possiblev

                                                                                    • September 18, 2015 at 7:32 pm
                                                                                    ed williams
                                                                                    Participant

                                                                                      Never Gonna Stop, please be careful when giving advice about Yervoy!!!! The reason that we have the drug today  in part is due to Oncologist that didn't stop giving it. In early trials patients had scans that looked worse before they eventually got better. Dr. Jedd Wolchok of Memorial Sloan Kettering who is one of the leading Oncologist in the Melanoma field has stated this finding of delayed response with Ipi many times when giving lectures to other Oncologist about how to manage the side effects of Yervoy and how the drug works!!! The most important advice that we can give to new Melanoma patients is to seek out a Oncologist that is a specialist in Melanoma.

                                                                                    • September 17, 2015 at 3:17 pm
                                                                                    Never Gonna Stop
                                                                                    Participant

                                                                                      Sorry to hear that you've progressed. Have you looked into trials for PD-1 or PD-L1 inhibitors? Sounds like you fit the definition of "failing" Yervoy, and I would think some new doors would be opened up for you in trials.

                                                                                      Know that there's always hope, though!

                                                                                  Viewing 5 reply threads
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