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  • Post
    • March 13, 2015 at 1:40 pm
    eturner82
    Participant

      I've had four doses of PD1 and just had my first set of scans, there was some growth in a met in my spine and a new 9mm lung met and a new 1.3cm adrenal gland met. I have mets through body in the bones and in the lungs other than what I have stated everything else was stable ( no growth). Any ideas on what I should do from here, any advice would be helpful.

      Thank You

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    • Replies
        • March 13, 2015 at 2:48 pm
        Mat
        Participant

          I recently started PD-1 (2 infusions). My onc alerted me that results such as yours are possible. My impression is that she would recommend proceeding with PD-1 in such a circumstance. If you search the posts, there are a number of folks that did not show an immediate response to PD-1 at the first set of scans. (Although you didn't mention the brain, I would want my brain scanned at the sign of any progression elsewhere in the body–treat with SRS if needed, etc.)

            • March 13, 2015 at 2:53 pm
            eturner82
            Participant

              Ok thank you- the doctor has stated we will contine on with more treatments of PD1. I did have a brain scan and it was clear.

              • March 13, 2015 at 2:53 pm
              eturner82
              Participant

                Ok thank you- the doctor has stated we will contine on with more treatments of PD1. I did have a brain scan and it was clear.

                • March 13, 2015 at 2:53 pm
                eturner82
                Participant

                  Ok thank you- the doctor has stated we will contine on with more treatments of PD1. I did have a brain scan and it was clear.

                • March 13, 2015 at 2:48 pm
                Mat
                Participant

                  I recently started PD-1 (2 infusions). My onc alerted me that results such as yours are possible. My impression is that she would recommend proceeding with PD-1 in such a circumstance. If you search the posts, there are a number of folks that did not show an immediate response to PD-1 at the first set of scans. (Although you didn't mention the brain, I would want my brain scanned at the sign of any progression elsewhere in the body–treat with SRS if needed, etc.)

                  • March 13, 2015 at 2:48 pm
                  Mat
                  Participant

                    I recently started PD-1 (2 infusions). My onc alerted me that results such as yours are possible. My impression is that she would recommend proceeding with PD-1 in such a circumstance. If you search the posts, there are a number of folks that did not show an immediate response to PD-1 at the first set of scans. (Although you didn't mention the brain, I would want my brain scanned at the sign of any progression elsewhere in the body–treat with SRS if needed, etc.)

                    • March 13, 2015 at 3:18 pm
                    Bubbles
                    Participant

                      Mat is right!  The now, finally!!!, accepted rule with immunotherapies is:  "Give them time!!!"  Sometimes what looks like inital growth on scans is enlargement in the area of the tumor due to the infiltration of t-cells and tumor death!!!  Proceeding with additional treatment sounds good to me.  Fingers crossed that those tumors are enlarged just before their demise!!!  Wishing you my best.  Celeste

                      • March 13, 2015 at 3:18 pm
                      Bubbles
                      Participant

                        Mat is right!  The now, finally!!!, accepted rule with immunotherapies is:  "Give them time!!!"  Sometimes what looks like inital growth on scans is enlargement in the area of the tumor due to the infiltration of t-cells and tumor death!!!  Proceeding with additional treatment sounds good to me.  Fingers crossed that those tumors are enlarged just before their demise!!!  Wishing you my best.  Celeste

                        • March 13, 2015 at 3:18 pm
                        Bubbles
                        Participant

                          Mat is right!  The now, finally!!!, accepted rule with immunotherapies is:  "Give them time!!!"  Sometimes what looks like inital growth on scans is enlargement in the area of the tumor due to the infiltration of t-cells and tumor death!!!  Proceeding with additional treatment sounds good to me.  Fingers crossed that those tumors are enlarged just before their demise!!!  Wishing you my best.  Celeste

                          • March 13, 2015 at 4:02 pm
                          arthurjedi007
                          Participant

                            One thing I would ask myself is am I feeling better? A lot of people the immunotherapies take longer to kick in than four doses. When I had three doses and the scan showed some stuff still growing the doc was almost ready to pull me off the Eap trial. Last Tuesday I got dose 15. If I'm feeling better or ok I would give it more time and make sure to have a plan b just encase. Granted what that plan b could be I have no idea. Another thing I did was compare the pet scans myself. The reports and docs did not mention spots that disappeared but when I pulled up even my relatives could see little dots that used to be there weren't there anymore.

                            So go with your gut feeling but I would think staying on the pd1 for now is probably a good idea.

                            Artie

                            • March 13, 2015 at 4:02 pm
                            arthurjedi007
                            Participant

                              One thing I would ask myself is am I feeling better? A lot of people the immunotherapies take longer to kick in than four doses. When I had three doses and the scan showed some stuff still growing the doc was almost ready to pull me off the Eap trial. Last Tuesday I got dose 15. If I'm feeling better or ok I would give it more time and make sure to have a plan b just encase. Granted what that plan b could be I have no idea. Another thing I did was compare the pet scans myself. The reports and docs did not mention spots that disappeared but when I pulled up even my relatives could see little dots that used to be there weren't there anymore.

                              So go with your gut feeling but I would think staying on the pd1 for now is probably a good idea.

                              Artie

                              • March 13, 2015 at 4:02 pm
                              arthurjedi007
                              Participant

                                One thing I would ask myself is am I feeling better? A lot of people the immunotherapies take longer to kick in than four doses. When I had three doses and the scan showed some stuff still growing the doc was almost ready to pull me off the Eap trial. Last Tuesday I got dose 15. If I'm feeling better or ok I would give it more time and make sure to have a plan b just encase. Granted what that plan b could be I have no idea. Another thing I did was compare the pet scans myself. The reports and docs did not mention spots that disappeared but when I pulled up even my relatives could see little dots that used to be there weren't there anymore.

                                So go with your gut feeling but I would think staying on the pd1 for now is probably a good idea.

                                Artie

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