Opinion for friend

› Forums › General Melanoma Community › Opinion for friend

  • Post
    • March 24, 2016 at 3:57 am
    Mnabean
    Participant

      My friend was diagnosed stage IV in December 2015. Started opdivo/yervoy combo in Jan and had to stop after 2 treatments. She had to have fluid drained from the heart cavity and still has drains. Her physician said there was nothing more he could do. They never had a 2nd opinion. I pushed for one and they went to Cleveland Clinic and again were told nothing more they could do. She is BRAF neg. They didn't even suggest a MEK or Keytruda. I would love for them to see someone in NY or TX but I don't them to be dissappointed again, but I want to make sure all options have been considered. She is weak, but as far as I know, it has not metasized to liver or brain. Any suggestions would be amazing! 

    Viewing 8 reply threads
    • Replies
        • March 24, 2016 at 3:15 pm
        Bubbles
        Participant

          It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

          I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

          It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

          If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

           

          • March 24, 2016 at 3:15 pm
          Bubbles
          Participant

            It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

            I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

            It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

            If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

             

            • March 24, 2016 at 3:15 pm
            Bubbles
            Participant

              It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

              I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

              It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

              If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

               

              • March 24, 2016 at 3:16 pm
              Bubbles
              Participant

                It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

                I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

                If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

                 

                • March 24, 2016 at 3:16 pm
                Bubbles
                Participant

                  It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

                  I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                  It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

                  If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

                   

                  • March 24, 2016 at 3:16 pm
                  Bubbles
                  Participant

                    It is hard for me to answer you given my limited knowledge of your friend. However, it seems that simply continuing Opdivo and being placed on steroids could be very helpful. Yervoy is the drug that causes most side effects from the combo.  An important question…is what exactly is in the fluid around the heart? Does it contain melanoma cells?  It is possible for melanoma to be in that space as well. Seeing a melanoma specialist who is at the top of the game would be very important. I have seen one report of ipi (yervoy) induced pericarditis….but it was late onset..and pericardial effusion can be due to melanoma.  Sadly, it is not infreqent on autopsy but not commonly looked for while we are still here.  The fluid should certainly be analyzed for melanoma cells if it has not. 

                    I recently reported a synopsis of a webinar (with a link to the audio) by Dr. Weber at NYU: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                    It covers many trials that are promising for melanoma patients….but they are trials….participation in which….is not for everyone. Your friend's doc could certainly contact Dr. Weber for advice regarding a treatment plan. I have never known him to fail to answer anyone.

                    If the things you see on the post don't make sense or you have quesions….use the search bubble at the top left of my blog or ask here. Smart helpful peeps will give you good intel here. Wishing you and your friend my best.  Celeste

                     

                    • March 24, 2016 at 7:13 pm
                    Mat
                    Participant

                      To the extent you're focused on NY, I'd put Dr. Wolchok (Sloan) in the same category as Weber–can't imagine that he wouldn't consult with your friend's onc, particularly on the subject of whether nivo may be continued in her circumstance.

                      • March 24, 2016 at 7:13 pm
                      Mat
                      Participant

                        To the extent you're focused on NY, I'd put Dr. Wolchok (Sloan) in the same category as Weber–can't imagine that he wouldn't consult with your friend's onc, particularly on the subject of whether nivo may be continued in her circumstance.

                        • March 24, 2016 at 7:13 pm
                        Mat
                        Participant

                          To the extent you're focused on NY, I'd put Dr. Wolchok (Sloan) in the same category as Weber–can't imagine that he wouldn't consult with your friend's onc, particularly on the subject of whether nivo may be continued in her circumstance.

                      Viewing 8 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