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Ugh! After 30 rounds of Keytruda, a new tumor has developed.

Forums General Melanoma Community Ugh! After 30 rounds of Keytruda, a new tumor has developed.

  • Post
    Wheels1994
    Participant

      August 2014 diagnosed from completely healthy to stage 4.

      Mets in lungs, liver, spleen, stomach, shoulder, adrenal glands, axilary glands.

      Took Keytruda in January 2015 every 3 weeks.

      Worked immediately and over course of 25 treatments and 5 CTs most everything disappered.

      PET/CT just revealed that I have a new 3.6cm x 1cm tumor in small bowel.  Wasn't there in July.

      1) Was never a complete responder as CTs still showed small stuff even though most disappeared.

      2) REALLY disappointed that it looks like one got passed the goalie and it spread to a new area I hadn't had mets before (small bowel)

      3) Consult this week but assume plan will be to resect the small bowel and stitch it back up, removing mass.

      4) I have TIL cells in storage at MD Anderson from 2 years ago.  They'd like me to come back to harvest these new cells in bowel.  Wonder if I can stay local (live in a major city with good cancer center) and have the T-cells shipped to them?  I guess I'll find out at the consult.

      5) Do you know of situations like mine?  Keytruda works for 25+ treatments, responded incredibly well but not to the point of NED, then new sizable hypermetabolic tumor pops up?

      Obviously fortunate to be a responder.  New developments are frustrating like we all experience with new news.  Thanks for any feedback and take care!

    Viewing 11 reply threads
    • Replies
        ed williams
        Participant

          If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed

          ed williams
          Participant

            If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed

              ed williams
              Participant

                Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q

                ed williams
                Participant

                  Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q

                  ed williams
                  Participant

                    Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q

                  ed williams
                  Participant

                    If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed

                    Mat
                    Participant

                      From prior experience, MDA will only harvest on site.

                      Mat
                      Participant

                        From prior experience, MDA will only harvest on site.

                        Mat
                        Participant

                          From prior experience, MDA will only harvest on site.

                          _Paul_
                          Participant

                            Hi Anonymous,

                            I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.

                            We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).

                            Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.

                            So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.

                            I hope this helps and I wish you the best.

                            – Paul

                            _Paul_
                            Participant

                              Hi Anonymous,

                              I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.

                              We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).

                              Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.

                              So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.

                              I hope this helps and I wish you the best.

                              – Paul

                              _Paul_
                              Participant

                                Hi Anonymous,

                                I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.

                                We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).

                                Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.

                                So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.

                                I hope this helps and I wish you the best.

                                – Paul

                                Amanda
                                Participant
                                  My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial.
                                  Amanda
                                  Participant
                                    My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial.
                                    Amanda
                                    Participant
                                      My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial.
                                        Amanda
                                        Participant
                                          I should also say he had good shrinkage innitially from the anti-pd1 alone. Then about 3 1/2years later the new tumors popped up.
                                          Amanda
                                          Participant
                                            I should also say he had good shrinkage innitially from the anti-pd1 alone. Then about 3 1/2years later the new tumors popped up.
                                            Amanda
                                            Participant
                                              I should also say he had good shrinkage innitially from the anti-pd1 alone. Then about 3 1/2years later the new tumors popped up.
                                              _Paul_
                                              Participant

                                                Amanda, I would love to here the scan results when you get them.

                                                Thanks – _Paul_

                                                _Paul_
                                                Participant

                                                  Amanda, I would love to here the scan results when you get them.

                                                  Thanks – _Paul_

                                                  _Paul_
                                                  Participant

                                                    Amanda, I would love to here the scan results when you get them.

                                                    Thanks – _Paul_

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