Advice need for stage IV melanoma in liver…tried ipi, pd1 and BRAF inhibitors

› Forums › General Melanoma Community › Advice need for stage IV melanoma in liver…tried ipi, pd1 and BRAF inhibitors

  • Post
    • March 6, 2015 at 4:16 am
    mlyn
    Participant

      Hi, all, 

      I'm seeking advice for my 34-year old husband who has stage IV melanoma. We have run through the treatment options but remain in a dire situation with runaway tumors in the liver. 

      He had a lymph node dissection in July 2013, followed by brain surgery and radiation for a brain met in October 2013. He then tried yervoy but the melanoma continued to spread to the spleen and liver. He started the BRAF inhibitors in March 2014, which worked wonders. In April 2014, he started the anti-KIR and anti-PD1 trial at Memorial Sloan Kettering. He had dramatic shrinkage in all of the lesions and was in tip top shape over the summer. He transfered to Johns Hopkins as it was closer to home. In October, the tumor on the spleen started bleeding and he had to have splenectomy. Then a few weeks later, he was in incredible pain on the right side. The tumors on his liver also started bleeding. He had to go off the trial. 

      December was a low point. The liver mets started growing again and he was hospitalized for the pain. His doctor put him back on the BRAF inhibitors plus pembrolizumab/Keytruda. His blood work improved week after week. Suddenly, his blood work is out of whack and the scans show that the liver tumors are still growing. His doctor stopped pembro as he didn't think his liver could handle it. He is keeping him on the BRAF inhibitors but it seems my husband is building resistance to them.  

      We don't know what else to do at this point. We want to keep fighting but there don't seem to be any good options. We are beyond frustrated since the treatment was working so well until the tumors started bleeding.

      Any advice or treatment suggestions would be grately appreciated. Thanks so much!

       

    Viewing 8 reply threads
    • Replies
        • March 6, 2015 at 2:29 pm
        yazziemac
        Participant

          Hi 

          I don't have any advice to give you, but I wanted to let you know that I'm thinking of you.  My husband, Pete, is also at Stage 4 with liver mets (as well as in other areas). He also had a brain met previously and had surgery and radiation for that.   He is starting Yervoy next week for the first time and I also experience a lot of anxiety about how he will respond.  I wish you and your husband the very best outcome possible!

          Yasmin

          • March 6, 2015 at 2:29 pm
          yazziemac
          Participant

            Hi 

            I don't have any advice to give you, but I wanted to let you know that I'm thinking of you.  My husband, Pete, is also at Stage 4 with liver mets (as well as in other areas). He also had a brain met previously and had surgery and radiation for that.   He is starting Yervoy next week for the first time and I also experience a lot of anxiety about how he will respond.  I wish you and your husband the very best outcome possible!

            Yasmin

              • March 6, 2015 at 5:52 pm
              mlyn
              Participant

                Thanks so much, Yasmin. I will be thinking of you and your husband, too. Hoping that the Yervoy will do the trick for him.

                All the best,

                • March 6, 2015 at 5:52 pm
                mlyn
                Participant

                  Thanks so much, Yasmin. I will be thinking of you and your husband, too. Hoping that the Yervoy will do the trick for him.

                  All the best,

                  • March 6, 2015 at 5:52 pm
                  mlyn
                  Participant

                    Thanks so much, Yasmin. I will be thinking of you and your husband, too. Hoping that the Yervoy will do the trick for him.

                    All the best,

                  • March 6, 2015 at 2:29 pm
                  yazziemac
                  Participant

                    Hi 

                    I don't have any advice to give you, but I wanted to let you know that I'm thinking of you.  My husband, Pete, is also at Stage 4 with liver mets (as well as in other areas). He also had a brain met previously and had surgery and radiation for that.   He is starting Yervoy next week for the first time and I also experience a lot of anxiety about how he will respond.  I wish you and your husband the very best outcome possible!

                    Yasmin

                    • March 6, 2015 at 2:30 pm
                    arthurjedi007
                    Participant

                      Wow that is awful. Sorry I don't know what to say except have you checked with what the docs at msk think can be done. I've heard someone mention liver embolism with other things. I'm not sure what that is. Sorry I couldn't be more help.

                      Artie

                      • March 6, 2015 at 2:30 pm
                      arthurjedi007
                      Participant

                        Wow that is awful. Sorry I don't know what to say except have you checked with what the docs at msk think can be done. I've heard someone mention liver embolism with other things. I'm not sure what that is. Sorry I couldn't be more help.

                        Artie

                        • March 6, 2015 at 2:30 pm
                        arthurjedi007
                        Participant

                          Wow that is awful. Sorry I don't know what to say except have you checked with what the docs at msk think can be done. I've heard someone mention liver embolism with other things. I'm not sure what that is. Sorry I couldn't be more help.

                          Artie

                          • March 6, 2015 at 4:08 pm
                          Bubbles
                          Participant

                            Sorry for all that you and your husband are dealing with. LAG3 trials may be an option. Some are actually looking for patients who failed anti-PD1. There are many other trials…but I don't know that those drugs are that helpful….as the trial results are what will tell the tale. At his age IL2 might be possible….but I fear his liver function will be a big factor in all these drugs. There are techniques to administer chemotherapy to the liver specifically as well as methods to embolize tumors in the liver…but those depend on a lot of things…liver function, whether they can isolate an individual tumor. Both your hospitals have some docs with great reputations. Perhaps these are things you could ask about.  Fingers crossed for you both. Celeste

                            • March 6, 2015 at 4:08 pm
                            Bubbles
                            Participant

                              Sorry for all that you and your husband are dealing with. LAG3 trials may be an option. Some are actually looking for patients who failed anti-PD1. There are many other trials…but I don't know that those drugs are that helpful….as the trial results are what will tell the tale. At his age IL2 might be possible….but I fear his liver function will be a big factor in all these drugs. There are techniques to administer chemotherapy to the liver specifically as well as methods to embolize tumors in the liver…but those depend on a lot of things…liver function, whether they can isolate an individual tumor. Both your hospitals have some docs with great reputations. Perhaps these are things you could ask about.  Fingers crossed for you both. Celeste

                                • March 6, 2015 at 10:33 pm
                                mlyn
                                Participant

                                  Thanks so much, Celeste. I will look into the LAG3 trials. I'm just not sure he would qualify for another trial at this point. Someone just pointed me in the direction of SIR-Spheres® Microspheres Radioembolization, so I'm going to see if he would be a candidate for that. 

                                  http://skyridgemedcenter.com/service/cancer-care-minimally-invasive-liver-cancer-treatments

                                  We will keep searching! Your blog has been a great resource for us throughout this journey. Thanks for sharing your story and expertise.

                                  Best,

                                   

                                  • March 6, 2015 at 10:33 pm
                                  mlyn
                                  Participant

                                    Thanks so much, Celeste. I will look into the LAG3 trials. I'm just not sure he would qualify for another trial at this point. Someone just pointed me in the direction of SIR-Spheres® Microspheres Radioembolization, so I'm going to see if he would be a candidate for that. 

                                    http://skyridgemedcenter.com/service/cancer-care-minimally-invasive-liver-cancer-treatments

                                    We will keep searching! Your blog has been a great resource for us throughout this journey. Thanks for sharing your story and expertise.

                                    Best,

                                     

                                    • March 6, 2015 at 10:33 pm
                                    mlyn
                                    Participant

                                      Thanks so much, Celeste. I will look into the LAG3 trials. I'm just not sure he would qualify for another trial at this point. Someone just pointed me in the direction of SIR-Spheres® Microspheres Radioembolization, so I'm going to see if he would be a candidate for that. 

                                      http://skyridgemedcenter.com/service/cancer-care-minimally-invasive-liver-cancer-treatments

                                      We will keep searching! Your blog has been a great resource for us throughout this journey. Thanks for sharing your story and expertise.

                                      Best,

                                       

                                    • March 6, 2015 at 4:08 pm
                                    Bubbles
                                    Participant

                                      Sorry for all that you and your husband are dealing with. LAG3 trials may be an option. Some are actually looking for patients who failed anti-PD1. There are many other trials…but I don't know that those drugs are that helpful….as the trial results are what will tell the tale. At his age IL2 might be possible….but I fear his liver function will be a big factor in all these drugs. There are techniques to administer chemotherapy to the liver specifically as well as methods to embolize tumors in the liver…but those depend on a lot of things…liver function, whether they can isolate an individual tumor. Both your hospitals have some docs with great reputations. Perhaps these are things you could ask about.  Fingers crossed for you both. Celeste

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