Radition + Pembrolizumab

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  • Post
    • January 19, 2017 at 7:14 am
    Cindyco
    Participant

      Mom started radiation on Tuesday (5 sessions total, every other day).  So far, she has been mostly nauseous and tired.  They said that she would get some pain relief, but she hasn't felt it yet. Tomorrow is the second session, so hopefully it will come soon. 

      We also found out today that they are planning to put her on Keytruda/Pembrolizumab.  She previously did one dose of ipi/nivo before stopping due to high liver numbers, so we hope that the pembro will be easier on her.  Originally there had been talk of putting her on nivolumab monotherapy, so we're not sure why the change.  I vaguely remember them saying that only Stage IV could have Keytruda back when we were first given the ipi/nivo combo treatment, so I'm worried that they consider her Stage IV now (the newest scan showed the same anorectal mass and regional lymph node spread, but also a few tiny lung nodules that can't be biopsied yet).  Maybe they are counting the lung nodules as mets already? 

      At any rate, we are anxious to move forward and start infusions.

    Viewing 8 reply threads
    • Replies
        • January 19, 2017 at 4:46 pm
        Jules
        Participant

          Hi Cindy,

          to my knowledge both the ipi/nivo combo and pembro are approved for stage 4 but also unresectable stage 3 so if her mass was unresectable that makes sense. 

          I just wanted to share that my dad finished 6 weeks of radiation and had his 4th dose of keytruda/pembro last week. His alt and ast are usually slightly elevated but his labs have shown them stable and within points of normal so maybe the docs are seeing that pembro is easier on the liver? He has 2 sub qs and had one large mass right around the lymph nodes that were removed under his primary, that large mass is gone, one small sub q is gone and the largest sub q has gone down quite a bit. The radiation on the neck was rough but he is healing nicely- mainly his side effects were fatigue from both the radiation and the keytruda. He had trouble swallowing because of where he was getting the radiation and lost about 15 lbs but he is starting to bounce back. His radiation treatments were 5 days a week for 6 weeks. 

          I hope your mom responds to her treatment and the pembro has an easier side effect profile for her to tolerate- the combo can be so toxic so hopefully the single agent will be better. 

            • January 19, 2017 at 5:40 pm
            Cindyco
            Participant

              I'm so glad that your dad is responding well! I hope that my mom has a similar response.  She has mucosal melanoma so her mass is in the anorectal region.  Her quality of life would significantly improve if the primary shrank enough to let her walk and sit normally.  I

              • January 20, 2017 at 3:23 am
              Jules
              Participant

                Thank you!! I really hope you're mom does too! Radiation and immunotherapy has a lot of promise. When used together data suggests a better immune response. I will keep your mom in my prayers. Keep us updated!

                J

                • January 20, 2017 at 3:23 am
                Jules
                Participant

                  Thank you!! I really hope you're mom does too! Radiation and immunotherapy has a lot of promise. When used together data suggests a better immune response. I will keep your mom in my prayers. Keep us updated!

                  J

                  • January 20, 2017 at 3:23 am
                  Jules
                  Participant

                    Thank you!! I really hope you're mom does too! Radiation and immunotherapy has a lot of promise. When used together data suggests a better immune response. I will keep your mom in my prayers. Keep us updated!

                    J

                    • January 19, 2017 at 5:40 pm
                    Cindyco
                    Participant

                      I'm so glad that your dad is responding well! I hope that my mom has a similar response.  She has mucosal melanoma so her mass is in the anorectal region.  Her quality of life would significantly improve if the primary shrank enough to let her walk and sit normally.  I

                      • January 19, 2017 at 5:40 pm
                      Cindyco
                      Participant

                        I'm so glad that your dad is responding well! I hope that my mom has a similar response.  She has mucosal melanoma so her mass is in the anorectal region.  Her quality of life would significantly improve if the primary shrank enough to let her walk and sit normally.  I

                      • January 19, 2017 at 4:46 pm
                      Jules
                      Participant

                        Hi Cindy,

                        to my knowledge both the ipi/nivo combo and pembro are approved for stage 4 but also unresectable stage 3 so if her mass was unresectable that makes sense. 

                        I just wanted to share that my dad finished 6 weeks of radiation and had his 4th dose of keytruda/pembro last week. His alt and ast are usually slightly elevated but his labs have shown them stable and within points of normal so maybe the docs are seeing that pembro is easier on the liver? He has 2 sub qs and had one large mass right around the lymph nodes that were removed under his primary, that large mass is gone, one small sub q is gone and the largest sub q has gone down quite a bit. The radiation on the neck was rough but he is healing nicely- mainly his side effects were fatigue from both the radiation and the keytruda. He had trouble swallowing because of where he was getting the radiation and lost about 15 lbs but he is starting to bounce back. His radiation treatments were 5 days a week for 6 weeks. 

                        I hope your mom responds to her treatment and the pembro has an easier side effect profile for her to tolerate- the combo can be so toxic so hopefully the single agent will be better. 

                        • January 19, 2017 at 4:46 pm
                        Jules
                        Participant

                          Hi Cindy,

                          to my knowledge both the ipi/nivo combo and pembro are approved for stage 4 but also unresectable stage 3 so if her mass was unresectable that makes sense. 

                          I just wanted to share that my dad finished 6 weeks of radiation and had his 4th dose of keytruda/pembro last week. His alt and ast are usually slightly elevated but his labs have shown them stable and within points of normal so maybe the docs are seeing that pembro is easier on the liver? He has 2 sub qs and had one large mass right around the lymph nodes that were removed under his primary, that large mass is gone, one small sub q is gone and the largest sub q has gone down quite a bit. The radiation on the neck was rough but he is healing nicely- mainly his side effects were fatigue from both the radiation and the keytruda. He had trouble swallowing because of where he was getting the radiation and lost about 15 lbs but he is starting to bounce back. His radiation treatments were 5 days a week for 6 weeks. 

                          I hope your mom responds to her treatment and the pembro has an easier side effect profile for her to tolerate- the combo can be so toxic so hopefully the single agent will be better. 

                          • January 19, 2017 at 6:04 pm
                          Casitas1
                          Participant

                            Hi Cindy, Sounds similar to my journey. Minus the radiation, i had two doses ipi/nivo and had to stop due to Autoimmune pancreatitis We tried two single doses of Nivo. and had to stop due to liver counts through the roof! After a lengthy stint on steroids for both we tried Pembro. I responded almost immediately and am now NED.

                            Best to your Mom,
                            Paul

                              • January 19, 2017 at 6:30 pm
                              Cindyco
                              Participant

                                Thanks for sharing Paul, this gives us so much hope! So happy for you and so excited to hear about the possibility of NED!  My mom progressed while on steroids after ipi/nivo, so we are so scared of another derailing side effect that will stop treatment. 

                                • January 19, 2017 at 6:30 pm
                                Cindyco
                                Participant

                                  Thanks for sharing Paul, this gives us so much hope! So happy for you and so excited to hear about the possibility of NED!  My mom progressed while on steroids after ipi/nivo, so we are so scared of another derailing side effect that will stop treatment. 

                                  • January 19, 2017 at 6:30 pm
                                  Cindyco
                                  Participant

                                    Thanks for sharing Paul, this gives us so much hope! So happy for you and so excited to hear about the possibility of NED!  My mom progressed while on steroids after ipi/nivo, so we are so scared of another derailing side effect that will stop treatment. 

                                  • January 19, 2017 at 6:04 pm
                                  Casitas1
                                  Participant

                                    Hi Cindy, Sounds similar to my journey. Minus the radiation, i had two doses ipi/nivo and had to stop due to Autoimmune pancreatitis We tried two single doses of Nivo. and had to stop due to liver counts through the roof! After a lengthy stint on steroids for both we tried Pembro. I responded almost immediately and am now NED.

                                    Best to your Mom,
                                    Paul

                                    • January 19, 2017 at 6:04 pm
                                    Casitas1
                                    Participant

                                      Hi Cindy, Sounds similar to my journey. Minus the radiation, i had two doses ipi/nivo and had to stop due to Autoimmune pancreatitis We tried two single doses of Nivo. and had to stop due to liver counts through the roof! After a lengthy stint on steroids for both we tried Pembro. I responded almost immediately and am now NED.

                                      Best to your Mom,
                                      Paul

                                      • January 19, 2017 at 9:09 pm
                                      Polymath
                                      Participant

                                        Hi Cindy,

                                        Sounds like this new plan may indeed be good for Mom.  I did radiation simultaneously while doing the ipi/nivo combo.  There appears to be benefits in the combo of radiation and immunotherapy so there is reason to think positive that this plan may be of great help.  Although it sounds bad, I think they do consider her stage IV but it opens up many new possibilities in treatment options.  Best in the battle.

                                        Gary

                                        • January 19, 2017 at 9:09 pm
                                        Polymath
                                        Participant

                                          Hi Cindy,

                                          Sounds like this new plan may indeed be good for Mom.  I did radiation simultaneously while doing the ipi/nivo combo.  There appears to be benefits in the combo of radiation and immunotherapy so there is reason to think positive that this plan may be of great help.  Although it sounds bad, I think they do consider her stage IV but it opens up many new possibilities in treatment options.  Best in the battle.

                                          Gary

                                          • January 19, 2017 at 9:09 pm
                                          Polymath
                                          Participant

                                            Hi Cindy,

                                            Sounds like this new plan may indeed be good for Mom.  I did radiation simultaneously while doing the ipi/nivo combo.  There appears to be benefits in the combo of radiation and immunotherapy so there is reason to think positive that this plan may be of great help.  Although it sounds bad, I think they do consider her stage IV but it opens up many new possibilities in treatment options.  Best in the battle.

                                            Gary

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