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Keytruda Swelling Tumors?…and next step
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Keytruda Swelling Tumors?…and next step

› Forums › Caregiver Community › Keytruda Swelling Tumors?…and next step

  • Post
    • February 29, 2016 at 11:31 pm
    davekarrie
    Participant

      Hello all warriors and caregivers, I have been on Taf/mek since November and it worked great to shrink my lung/abdomen tumors and my neck vertebrae tumor.  We added Keytruda in about 6 weeks ago and my last scan a few weeks ago shows the lung tumors are growing and my abdomen tumor is growing, it grew nearly 2cm to 3.3cm.  My oncologists say the Keytruda could be swelling the tumors, but my question is how much? Has anyone that has been on Keytruda seen swelling of tumors then regression? If so how much?  We will be scanning the end of March after our trip to Orlando through the Jack and Jill foundation for late stage cancer ( a great resource for those with young kids that can take a trip if selected).  If the scans continue with progression we are onto the Opdivo/yervoy combo.

      Thanks for any advice help and never give up!

      Dave

    Viewing 11 reply threads
    • Replies
        • March 1, 2016 at 12:38 pm
        Scooby123
        Participant

          Hi ,

          So sorry that you are having a rough time at present. not had Keydruda but lots on here have so you should get some response. Hope you enjoy your trip and keep fighting

          Scooby123

          • March 1, 2016 at 12:38 pm
          Scooby123
          Participant

            Hi ,

            So sorry that you are having a rough time at present. not had Keydruda but lots on here have so you should get some response. Hope you enjoy your trip and keep fighting

            Scooby123

            • March 1, 2016 at 12:38 pm
            Scooby123
            Participant

              Hi ,

              So sorry that you are having a rough time at present. not had Keydruda but lots on here have so you should get some response. Hope you enjoy your trip and keep fighting

              Scooby123

              • March 1, 2016 at 1:40 pm
              JuTMSY4
              Participant

                Yes.  I had this experience.  I began Keytruda last March after the standard ipi treatment.  Ipi eliminated most of my pain, but my mets remained and possible got larger and/or more plentiful.  

                After my first 6 months of Keytruda, my bone mets appeared to be shrinking (no one knows really) or changing.  But my liver mets were getting slightly larger (I seem to remember about a 1cm growth or so).  Doc thought this might be inflammation and really wanted to continue.  We did.  Finally, after 9 months, we did a PET and learned that all of the tumors showed up increased FDG uptake or rather no activity to suggest cancer.  Doc declared me NED (although, I guess NEAD).  
                 

                So, to answer your question, results of inflammation are hard to define as typical (some people get it very badly and have lots of inflammatory pain), but I did experience probably a 1cm growth from what was likely keytruda.  It's hard to say and it's anecdotal, but that's what I experienced.  

                • March 1, 2016 at 1:40 pm
                JuTMSY4
                Participant

                  Yes.  I had this experience.  I began Keytruda last March after the standard ipi treatment.  Ipi eliminated most of my pain, but my mets remained and possible got larger and/or more plentiful.  

                  After my first 6 months of Keytruda, my bone mets appeared to be shrinking (no one knows really) or changing.  But my liver mets were getting slightly larger (I seem to remember about a 1cm growth or so).  Doc thought this might be inflammation and really wanted to continue.  We did.  Finally, after 9 months, we did a PET and learned that all of the tumors showed up increased FDG uptake or rather no activity to suggest cancer.  Doc declared me NED (although, I guess NEAD).  
                   

                  So, to answer your question, results of inflammation are hard to define as typical (some people get it very badly and have lots of inflammatory pain), but I did experience probably a 1cm growth from what was likely keytruda.  It's hard to say and it's anecdotal, but that's what I experienced.  

                    • March 1, 2016 at 1:41 pm
                    JuTMSY4
                    Participant

                      I should add that, crucially, new mets are sign of failure here.  I think that's why docs, if they see some growth, might tolerate it, but when new mets pop up, they prepare to move to the next step.  

                      • March 1, 2016 at 1:41 pm
                      JuTMSY4
                      Participant

                        I should add that, crucially, new mets are sign of failure here.  I think that's why docs, if they see some growth, might tolerate it, but when new mets pop up, they prepare to move to the next step.  

                        • March 1, 2016 at 1:41 pm
                        JuTMSY4
                        Participant

                          I should add that, crucially, new mets are sign of failure here.  I think that's why docs, if they see some growth, might tolerate it, but when new mets pop up, they prepare to move to the next step.  

                        • March 1, 2016 at 1:40 pm
                        JuTMSY4
                        Participant

                          Yes.  I had this experience.  I began Keytruda last March after the standard ipi treatment.  Ipi eliminated most of my pain, but my mets remained and possible got larger and/or more plentiful.  

                          After my first 6 months of Keytruda, my bone mets appeared to be shrinking (no one knows really) or changing.  But my liver mets were getting slightly larger (I seem to remember about a 1cm growth or so).  Doc thought this might be inflammation and really wanted to continue.  We did.  Finally, after 9 months, we did a PET and learned that all of the tumors showed up increased FDG uptake or rather no activity to suggest cancer.  Doc declared me NED (although, I guess NEAD).  
                           

                          So, to answer your question, results of inflammation are hard to define as typical (some people get it very badly and have lots of inflammatory pain), but I did experience probably a 1cm growth from what was likely keytruda.  It's hard to say and it's anecdotal, but that's what I experienced.  

                          • March 1, 2016 at 1:58 pm
                          ed williams
                          Participant

                            Dave, if you can find Bubbles(Celeste) name and click on it you will find old post that she has put up. Look up one with her blog link and you will find many links to recent and current thinking on progression and typical responses to targeted therapy. Wishing you the best!!! Ed

                            • March 1, 2016 at 1:58 pm
                            ed williams
                            Participant

                              Dave, if you can find Bubbles(Celeste) name and click on it you will find old post that she has put up. Look up one with her blog link and you will find many links to recent and current thinking on progression and typical responses to targeted therapy. Wishing you the best!!! Ed

                                • March 1, 2016 at 3:48 pm
                                Julie in SoCal
                                Participant

                                  Hi Dave,

                                  Celeste (Bubbles) has lots of good stuff on her site check it out.

                                  Also, both Yervoy and the PD-1 drugs take time to work and are known for presenting a "pseudo- progression".  I don't know if this is what happening with you, but it would be worth searching this board and Celest's site for "Pd1 and pseudo-progression" and "be patient with the patient".

                                  Shalom,

                                  Julie

                                  • March 1, 2016 at 3:48 pm
                                  Julie in SoCal
                                  Participant

                                    Hi Dave,

                                    Celeste (Bubbles) has lots of good stuff on her site check it out.

                                    Also, both Yervoy and the PD-1 drugs take time to work and are known for presenting a "pseudo- progression".  I don't know if this is what happening with you, but it would be worth searching this board and Celest's site for "Pd1 and pseudo-progression" and "be patient with the patient".

                                    Shalom,

                                    Julie

                                    • March 2, 2016 at 2:47 am
                                    davekarrie
                                    Participant

                                      Thank you all for the comments and support, treatments sometimes seem like a roll of the dice and we hope to get lucky I guess on that treatment that works for us!

                                      • March 2, 2016 at 2:47 am
                                      davekarrie
                                      Participant

                                        Thank you all for the comments and support, treatments sometimes seem like a roll of the dice and we hope to get lucky I guess on that treatment that works for us!

                                        • March 2, 2016 at 2:47 am
                                        davekarrie
                                        Participant

                                          Thank you all for the comments and support, treatments sometimes seem like a roll of the dice and we hope to get lucky I guess on that treatment that works for us!

                                          • March 1, 2016 at 3:48 pm
                                          Julie in SoCal
                                          Participant

                                            Hi Dave,

                                            Celeste (Bubbles) has lots of good stuff on her site check it out.

                                            Also, both Yervoy and the PD-1 drugs take time to work and are known for presenting a "pseudo- progression".  I don't know if this is what happening with you, but it would be worth searching this board and Celest's site for "Pd1 and pseudo-progression" and "be patient with the patient".

                                            Shalom,

                                            Julie

                                          • March 1, 2016 at 1:58 pm
                                          ed williams
                                          Participant

                                            Dave, if you can find Bubbles(Celeste) name and click on it you will find old post that she has put up. Look up one with her blog link and you will find many links to recent and current thinking on progression and typical responses to targeted therapy. Wishing you the best!!! Ed

                                            • March 2, 2016 at 3:59 pm
                                            Bubbles
                                            Participant

                                              Hi Dave,

                                              Here is a post specifically addressing Pembro (Keytruda) and pseudoprogression:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

                                              Here is another that addresses pseudoprogresion and info from melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/12/yep-immunotherapy-can-work-in-brainand.html

                                              I wish you well.  C

                                               

                                              • March 2, 2016 at 3:59 pm
                                              Bubbles
                                              Participant

                                                Hi Dave,

                                                Here is a post specifically addressing Pembro (Keytruda) and pseudoprogression:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

                                                Here is another that addresses pseudoprogresion and info from melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/12/yep-immunotherapy-can-work-in-brainand.html

                                                I wish you well.  C

                                                 

                                                • March 2, 2016 at 3:59 pm
                                                Bubbles
                                                Participant

                                                  Hi Dave,

                                                  Here is a post specifically addressing Pembro (Keytruda) and pseudoprogression:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

                                                  Here is another that addresses pseudoprogresion and info from melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/12/yep-immunotherapy-can-work-in-brainand.html

                                                  I wish you well.  C

                                                   

                                                    • March 3, 2016 at 1:37 am
                                                    davekarrie
                                                    Participant

                                                      Thank you for the website info! I will check them out. Dave

                                                      • March 3, 2016 at 1:37 am
                                                      davekarrie
                                                      Participant

                                                        Thank you for the website info! I will check them out. Dave

                                                        • March 3, 2016 at 1:37 am
                                                        davekarrie
                                                        Participant

                                                          Thank you for the website info! I will check them out. Dave

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