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Tumors were shrinking- now stable
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Tumors were shrinking- now stable

› Forums › Cutaneous Melanoma Community › Tumors were shrinking- now stable

  • Post
    • January 23, 2017 at 12:14 am
    Abbygx2589
    Participant

      Hi everyone,

      This is my first time posting but I read the boards here all the time. Thank you to every one who posts and supports each other. I am writing about my father who was diagnosed as stage IV last March (2016) after being diagnosed with stage 2 melanoma 17 years prior. We discovered it through a chest x-ray last winter , after his doctors had ignored his subcutaneous lumps for about a year, calling them lipomas. After all of the intial scans, we found out he had spots in his muscles, lung, pancreas, and multiple spots in the brain. He underwent cyberknife and began the ipi/nivo combo last spring in a clinical trial at BIMDC in Boston. He has shown response which is great and we are so thankful for- a 33% reduction in tumor size across the board- including the brain. After his last combo in July he became very sick and discovered he his pituitary had stopped producing cortisol so he now takes a low dose daily to make up for this. It is hard to believe he has stage IV cancer with how active and normal he seems. Anyway, finally, the reason I am writing is because his last scans were stable, the tumors did not shrink. This is the first time that nothing has shrunk. Has anyone had experience like this?  I am so afraid that the next scans will show growth. Have others experienced regrowth after shrinkage has turned to stability?

      Thank you all so much

    Viewing 8 reply threads
    • Replies
        • January 23, 2017 at 2:50 am
        Spl25
        Participant

          This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

          • January 23, 2017 at 2:50 am
          Spl25
          Participant

            This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

            • January 23, 2017 at 2:50 am
            Spl25
            Participant

              This is not uncommon based on my doctor's description, and I don't think (anecdotally) it means that the next scan won't be better than the last. At the end of the day, most of the people who respond to PD-1 don't respond completely, but a lot of them stay stable for a long time after an initial response.  

                • February 15, 2017 at 8:46 pm
                Abbygx2589
                Participant

                  They shrunk a little more this scan so you are right!

                  thanks!

                  • February 15, 2017 at 8:46 pm
                  Abbygx2589
                  Participant

                    They shrunk a little more this scan so you are right!

                    thanks!

                    • February 15, 2017 at 8:46 pm
                    Abbygx2589
                    Participant

                      They shrunk a little more this scan so you are right!

                      thanks!

                    • January 23, 2017 at 7:13 am
                    debwray
                    Participant

                      Hi,

                      Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

                      Good luck with your treatment

                      Deb

                        • January 23, 2017 at 6:13 pm
                        snow white
                        Participant

                          Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

                          xo Jen

                          • January 23, 2017 at 6:13 pm
                          snow white
                          Participant

                            Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

                            xo Jen

                            • January 23, 2017 at 6:13 pm
                            snow white
                            Participant

                              Oh Deb, you crack me up. Your description of "bad shit going on" is SO on point for this disease. 🙂

                              xo Jen

                              • January 23, 2017 at 9:22 pm
                              debwray
                              Participant

                                Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

                                Love Deb

                                Xx

                                • January 23, 2017 at 9:22 pm
                                debwray
                                Participant

                                  Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

                                  Love Deb

                                  Xx

                                  • January 23, 2017 at 9:22 pm
                                  debwray
                                  Participant

                                    Back on the combo…who hoo. Been at clinic from 9.00am…bloods.. Docs. Blood machine broke down.   Should finish treatment by 9.45 pm then the 70 mile drive home. But its been a good day..back on the treatment wagon..and not thrown off the trial. Anyone else on checkmate 401? They are extending drug holiday to 12 weeks but not yet rubber stamped by the needed committees…..makes sense as trial about managementofside effects and nearly thrown off trial as had side effects… Doh… Get pithier when tapping out on tablet…but you know what I mean..

                                    Love Deb

                                    Xx

                                  • January 23, 2017 at 7:13 am
                                  debwray
                                  Participant

                                    Hi,

                                    Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

                                    Good luck with your treatment

                                    Deb

                                    • January 23, 2017 at 7:13 am
                                    debwray
                                    Participant

                                      Hi,

                                      Another scenario is that the remaining lumps or tumours can be filled with immunre cells and the melanoma cells have gone. Until you have evidence of bad shit going on, it is conforting to know there is another more positive explanation. The ride can be wild at  times..but sometimes knowing there may be a positive explanation helps us to deal with current uncertainties

                                      Good luck with your treatment

                                      Deb

                                      • January 23, 2017 at 10:57 am
                                      Amanda
                                      Participant
                                        Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

                                        Note that he was only getting the anti pd1, but had previously received yervoy.

                                        About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

                                        Best wishes and i hope the best.

                                        Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

                                        -Amanda-

                                        • January 23, 2017 at 10:57 am
                                        Amanda
                                        Participant
                                          Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

                                          Note that he was only getting the anti pd1, but had previously received yervoy.

                                          About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

                                          Best wishes and i hope the best.

                                          Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

                                          -Amanda-

                                          • January 23, 2017 at 10:57 am
                                          Amanda
                                          Participant
                                            Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.

                                            Note that he was only getting the anti pd1, but had previously received yervoy.

                                            About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.

                                            Best wishes and i hope the best.

                                            Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.

                                            -Amanda-

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