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So disappointed- please need advice !!!
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So disappointed- please need advice !!!

› Forums › General Melanoma Community › So disappointed- please need advice !!!

  • Post
    • May 29, 2014 at 1:52 pm
    Maureen038
    Participant

      My husband has stage 4 melanoma in lungs(9 mets). He is Braf and Nras negative. He has done HD interferon, TILS therapy at NIH and is on Ipi3mg/kg and nivo 1mg/kg since October 2013. After three does of ipi/ nivo he developed hemolytic anemia and was off treatment and on high hose steroids for two months. He did have a scan in January that showed almost 50 percent reduction of lung mets. Since the end of February, he has only been on nivo and the latest scans show mediastinal and hilar lymphadenopathy and one lung met that has grown to 14 x 18 mm since January. We are finding out today if he can stay on trial even for a short period because he is only 1 mm over the growth proticol. We feel that nivo is at least slowing the progression and it's better to stay on it until we have a plan. We are looking into surgery too. Does anyone have any ideas or suggestions?? Any thoracic surgeon you recommend in DC area? Any help would be so appreciated. My head is spinning right now. 🙁

      Maureen

    Viewing 5 reply threads
    • Replies
        • May 29, 2014 at 11:49 pm
        BrianP
        Participant

          Maureen,

          So sorry to hear your latest.  You guys have really been through the wringer.  I wish I had some ideas for you to consider.  I was curious if your husband is on the BMS or Merck PD1.  If he's on Nivolumab and you really feel you can buy yourself some more time with anti PD1 you may be able to make a quick transition to a Merck EAP site.

          There are some trials for Braf negative patients I posted yesterday on this thread.  There may be one or two that could be of help. 

          Prayers coming your way Maureen.  Hopefully others will chime in with some other ideas.

          Brian

          • May 29, 2014 at 11:49 pm
          BrianP
          Participant

            Maureen,

            So sorry to hear your latest.  You guys have really been through the wringer.  I wish I had some ideas for you to consider.  I was curious if your husband is on the BMS or Merck PD1.  If he's on Nivolumab and you really feel you can buy yourself some more time with anti PD1 you may be able to make a quick transition to a Merck EAP site.

            There are some trials for Braf negative patients I posted yesterday on this thread.  There may be one or two that could be of help. 

            Prayers coming your way Maureen.  Hopefully others will chime in with some other ideas.

            Brian

            • May 29, 2014 at 11:49 pm
            BrianP
            Participant

              Maureen,

              So sorry to hear your latest.  You guys have really been through the wringer.  I wish I had some ideas for you to consider.  I was curious if your husband is on the BMS or Merck PD1.  If he's on Nivolumab and you really feel you can buy yourself some more time with anti PD1 you may be able to make a quick transition to a Merck EAP site.

              There are some trials for Braf negative patients I posted yesterday on this thread.  There may be one or two that could be of help. 

              Prayers coming your way Maureen.  Hopefully others will chime in with some other ideas.

              Brian

              • May 31, 2014 at 7:14 pm
              jim Breitfeller
              Participant

                Maureen, you may want to look into HD IL-2. See my blog about combinatorial therapy with checkpoint therapy &.   hd IL-2 @ melanoma missionary

                http://melanomamissionary.blogspot.com

                Jimmy B

                • May 31, 2014 at 7:14 pm
                jim Breitfeller
                Participant

                  Maureen, you may want to look into HD IL-2. See my blog about combinatorial therapy with checkpoint therapy &.   hd IL-2 @ melanoma missionary

                  http://melanomamissionary.blogspot.com

                  Jimmy B

                    • June 2, 2014 at 2:01 pm
                    Maureen038
                    Participant

                      Thank you Jim and Brian for your support! We won't find out until sometime this week if Bill is out of the trial because Dr. Kirkwood is at ASCO. Bill has shown signs of having vitiligo on his face and arms which suggest to us that the nivolumbab might need more time. We are also having two consultations with thoracic surgeons at Georgetown ( and Dr. Atkins) and Hopkins because there is only one lung met that has grown about one cm since January. There is nothing new except for the enlarged lymph nodes that will need to be biopsied too. Most of the other mets have been stable with very little change.

                      Our biggest reduction in lung mets happened after three doses of ipi/ nivo ( 50 percent reduction of lung mets!!).Bill  developed hemolytic anemia, but all of his blood work is good now. His hemoglobin level is in the 12 range and his LDH level is 175. I'm not sure if he would be allowed to have ipi again, but if he could we would be interested in the ipi/ HD IL2. I know you have excellent information on your blog Jim so will take some time to read it.

                      Bill is still working full time and looks and feels great except for the constant dry mouth from the nivolumbab. He is a fighter and we are pushing forward to try to beat this stupid disease!!!

                       

                      Maureen

                      • June 2, 2014 at 2:01 pm
                      Maureen038
                      Participant

                        Thank you Jim and Brian for your support! We won't find out until sometime this week if Bill is out of the trial because Dr. Kirkwood is at ASCO. Bill has shown signs of having vitiligo on his face and arms which suggest to us that the nivolumbab might need more time. We are also having two consultations with thoracic surgeons at Georgetown ( and Dr. Atkins) and Hopkins because there is only one lung met that has grown about one cm since January. There is nothing new except for the enlarged lymph nodes that will need to be biopsied too. Most of the other mets have been stable with very little change.

                        Our biggest reduction in lung mets happened after three doses of ipi/ nivo ( 50 percent reduction of lung mets!!).Bill  developed hemolytic anemia, but all of his blood work is good now. His hemoglobin level is in the 12 range and his LDH level is 175. I'm not sure if he would be allowed to have ipi again, but if he could we would be interested in the ipi/ HD IL2. I know you have excellent information on your blog Jim so will take some time to read it.

                        Bill is still working full time and looks and feels great except for the constant dry mouth from the nivolumbab. He is a fighter and we are pushing forward to try to beat this stupid disease!!!

                         

                        Maureen

                        • June 2, 2014 at 2:01 pm
                        Maureen038
                        Participant

                          Thank you Jim and Brian for your support! We won't find out until sometime this week if Bill is out of the trial because Dr. Kirkwood is at ASCO. Bill has shown signs of having vitiligo on his face and arms which suggest to us that the nivolumbab might need more time. We are also having two consultations with thoracic surgeons at Georgetown ( and Dr. Atkins) and Hopkins because there is only one lung met that has grown about one cm since January. There is nothing new except for the enlarged lymph nodes that will need to be biopsied too. Most of the other mets have been stable with very little change.

                          Our biggest reduction in lung mets happened after three doses of ipi/ nivo ( 50 percent reduction of lung mets!!).Bill  developed hemolytic anemia, but all of his blood work is good now. His hemoglobin level is in the 12 range and his LDH level is 175. I'm not sure if he would be allowed to have ipi again, but if he could we would be interested in the ipi/ HD IL2. I know you have excellent information on your blog Jim so will take some time to read it.

                          Bill is still working full time and looks and feels great except for the constant dry mouth from the nivolumbab. He is a fighter and we are pushing forward to try to beat this stupid disease!!!

                           

                          Maureen

                          • June 2, 2014 at 9:41 pm
                          jim Breitfeller
                          Participant

                            Maureen, I too am a patient (stage IV) of Dr. John M. Kirkwood since 2005.

                             

                            Jimmy B

                            • June 2, 2014 at 9:41 pm
                            jim Breitfeller
                            Participant

                              Maureen, I too am a patient (stage IV) of Dr. John M. Kirkwood since 2005.

                               

                              Jimmy B

                              • June 2, 2014 at 9:41 pm
                              jim Breitfeller
                              Participant

                                Maureen, I too am a patient (stage IV) of Dr. John M. Kirkwood since 2005.

                                 

                                Jimmy B

                              • May 31, 2014 at 7:14 pm
                              jim Breitfeller
                              Participant

                                Maureen, you may want to look into HD IL-2. See my blog about combinatorial therapy with checkpoint therapy &.   hd IL-2 @ melanoma missionary

                                http://melanomamissionary.blogspot.com

                                Jimmy B

                            Viewing 5 reply threads
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