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PD-1 START DATE!!
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PD-1 START DATE!!

› Forums › General Melanoma Community › PD-1 START DATE!!

  • Post
    • January 15, 2015 at 7:29 pm
    eturner82
    Participant

      My husbands doctor just called and moved up his PD-1 start date from next Wednesday to tomorrow!! Adam was not a responder to IPI and Braf drug worked for about 3 months. He has mets to hips, spine, femur and ribs ( to numerous to count) since finishing the ipi it has grown in both lungs, all mets in lungs are 6-11mm with one "large tumor" in the right. 

       I am aware PD1 works well in organs like the lungs but am nervous about bone mets responding! What can I expect as far as side effects? Any advice would be greatly appreciated!!

      Emily 

       

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    • Replies
        • January 15, 2015 at 7:49 pm
        Bubbles
        Participant

          Hi Emily,

          I wish your husband every success with anti-PD1.  Here is a post I put together a bit ago regarding anti-PD1 side effects.  I started a 2 1/2 year Nivolumab (now Opdivo) trial 4 years ago December and was given my last dose 19 months ago.  I remain NED.  Side effects of Opdivo and Keytruda are basically the same.  I hope this helps.

          Post on side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

          Post on anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

          Yours, Celeste

           

          • January 15, 2015 at 7:49 pm
          Bubbles
          Participant

            Hi Emily,

            I wish your husband every success with anti-PD1.  Here is a post I put together a bit ago regarding anti-PD1 side effects.  I started a 2 1/2 year Nivolumab (now Opdivo) trial 4 years ago December and was given my last dose 19 months ago.  I remain NED.  Side effects of Opdivo and Keytruda are basically the same.  I hope this helps.

            Post on side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

            Post on anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

            Yours, Celeste

             

            • January 15, 2015 at 7:49 pm
            Bubbles
            Participant

              Hi Emily,

              I wish your husband every success with anti-PD1.  Here is a post I put together a bit ago regarding anti-PD1 side effects.  I started a 2 1/2 year Nivolumab (now Opdivo) trial 4 years ago December and was given my last dose 19 months ago.  I remain NED.  Side effects of Opdivo and Keytruda are basically the same.  I hope this helps.

              Post on side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

              Post on anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

              Yours, Celeste

               

              • January 15, 2015 at 9:47 pm
              arthurjedi007
              Participant

                For bone tumors yes pd1 can be great. If the tumor is all in the bone though they really have no way to measure so it is just the fdg number which other things can contribute to it rising and lowering. Many of mine though are way past that.

                when I look at my April pet scan about 4 weeks before keytruda I can easily see 7 vertebrae with tumors that light up. Oh plus one tiny dot in my neck. The August scan i could see 3 plus the neck one and same with November scan. The rest I could not see anymore. I assume they are there cause the August scan listed them as shrinking just as a patient where you see your whole body with all the dots that's what I see.

                so yeah it works in bone but is difficult for them to measure.

                Artie

                • January 15, 2015 at 9:47 pm
                arthurjedi007
                Participant

                  For bone tumors yes pd1 can be great. If the tumor is all in the bone though they really have no way to measure so it is just the fdg number which other things can contribute to it rising and lowering. Many of mine though are way past that.

                  when I look at my April pet scan about 4 weeks before keytruda I can easily see 7 vertebrae with tumors that light up. Oh plus one tiny dot in my neck. The August scan i could see 3 plus the neck one and same with November scan. The rest I could not see anymore. I assume they are there cause the August scan listed them as shrinking just as a patient where you see your whole body with all the dots that's what I see.

                  so yeah it works in bone but is difficult for them to measure.

                  Artie

                  • January 15, 2015 at 9:47 pm
                  arthurjedi007
                  Participant

                    For bone tumors yes pd1 can be great. If the tumor is all in the bone though they really have no way to measure so it is just the fdg number which other things can contribute to it rising and lowering. Many of mine though are way past that.

                    when I look at my April pet scan about 4 weeks before keytruda I can easily see 7 vertebrae with tumors that light up. Oh plus one tiny dot in my neck. The August scan i could see 3 plus the neck one and same with November scan. The rest I could not see anymore. I assume they are there cause the August scan listed them as shrinking just as a patient where you see your whole body with all the dots that's what I see.

                    so yeah it works in bone but is difficult for them to measure.

                    Artie

                    • January 17, 2015 at 2:37 pm
                    JoshF
                    Participant

                      Wishing you all the best! Keep us posted on results.

                      • January 17, 2015 at 2:37 pm
                      JoshF
                      Participant

                        Wishing you all the best! Keep us posted on results.

                        • January 17, 2015 at 2:37 pm
                        JoshF
                        Participant

                          Wishing you all the best! Keep us posted on results.

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