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Liver mets
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Liver mets

› Forums › General Melanoma Community › Liver mets

  • Post
    • November 18, 2015 at 2:57 am
    Debbieamccoy
    Participant

      Talked to my  onc to day if my liver numbers don't get better and my liver doesn't decrease in size there's not much hope. I've only had 2 doses of the combo. My belly is still swollen. Buy no ascites . I'm exhausted from nine days in the hospital and exhausted and duds disappointed 

    Viewing 8 reply threads
    • Replies
        • November 18, 2015 at 5:11 am
        AnitaLoree
        Participant

          Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

          • November 18, 2015 at 5:11 am
          AnitaLoree
          Participant

            Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

            • November 18, 2015 at 5:11 am
            AnitaLoree
            Participant

              Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

              • November 18, 2015 at 4:21 pm
              Want2help
              Participant

                I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

                You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

                http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

                 

                  • November 18, 2015 at 5:50 pm
                  Scooby123
                  Participant

                    Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

                    thinking of you 

                    scooby❤️

                    • November 18, 2015 at 9:08 pm
                    Debbieamccoy
                    Participant

                      My dr said he will treat me as long as I want to get treated what ever that means 

                      • November 18, 2015 at 9:08 pm
                      Debbieamccoy
                      Participant

                        My dr said he will treat me as long as I want to get treated what ever that means 

                        • November 18, 2015 at 9:08 pm
                        Debbieamccoy
                        Participant

                          My dr said he will treat me as long as I want to get treated what ever that means 

                          • November 19, 2015 at 1:21 pm
                          Gwenmorgan
                          Participant

                            Any better?

                            • November 19, 2015 at 1:21 pm
                            Gwenmorgan
                            Participant

                              Any better?

                              • November 19, 2015 at 1:21 pm
                              Gwenmorgan
                              Participant

                                Any better?

                                • November 18, 2015 at 5:50 pm
                                Scooby123
                                Participant

                                  Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

                                  thinking of you 

                                  scooby❤️

                                  • November 18, 2015 at 5:50 pm
                                  Scooby123
                                  Participant

                                    Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

                                    thinking of you 

                                    scooby❤️

                                  • November 18, 2015 at 4:21 pm
                                  Want2help
                                  Participant

                                    I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

                                    You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

                                    http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

                                     

                                    • November 18, 2015 at 4:21 pm
                                    Want2help
                                    Participant

                                      I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

                                      You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

                                      http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

                                       

                                      • November 20, 2015 at 9:35 pm
                                      AmandaLivingston
                                      Participant

                                        Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

                                        http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

                                        My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

                                         

                                        He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

                                         

                                        http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

                                        We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

                                        http://faculty.mdanderson.org/Sapna_Patel/

                                        We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

                                         

                                        Hang in there.

                                        • November 20, 2015 at 9:35 pm
                                        AmandaLivingston
                                        Participant

                                          Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

                                          http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

                                          My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

                                           

                                          He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

                                           

                                          http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

                                          We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

                                          http://faculty.mdanderson.org/Sapna_Patel/

                                          We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

                                           

                                          Hang in there.

                                          • November 20, 2015 at 9:35 pm
                                          AmandaLivingston
                                          Participant

                                            Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

                                            http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

                                            My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

                                             

                                            He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

                                             

                                            http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

                                            We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

                                            http://faculty.mdanderson.org/Sapna_Patel/

                                            We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

                                             

                                            Hang in there.

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