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Beany
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Beany

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      • September 18, 2023 at 6:40 am
      Beany
      Participant
        Thank you all very much
        • September 15, 2023 at 3:04 am
        Beany
        Participant
          Hello chrispl1974,

          Thank you for your reply. Cured! I thought that was a word that they never used! Althoug I have heard Dr Weber use that word in some Youtube videos.

          Thanks again,

          • December 30, 2022 at 5:04 am
          Beany
          Participant
            Hello,
            I have had 20 infusions of nivo and no side effects. I am currently NED.

            • October 30, 2022 at 9:15 am
            Beany
            Participant
              I was way higher with AST 650 and ALT 752.
              Prednisone and mmf for one year before resuming opdivo only.
              Tumors shrank during prednisone.
              • June 4, 2022 at 5:28 pm
              Beany
              Participant
                Hello JudiAU,

                Thanks for your input too. So, it seems that where all you people are located the standard is two years after clean scans. I imagine that will take at least two years for those guidlines to filter down to Japan as everything here seems to move slowly.
                That booster shot of Opdivo sounds interesting. Is that common? I haven’t heard of any other MRF members doing that.

                Sincerely,

                • May 18, 2022 at 12:00 am
                Beany
                Participant
                  Hello Bubbles and Cindy,
                  Thank you both for your replies. Bubbles thank you delivering again. That clip and the transcript you kindly provided is amazing in terms of OS for patients after immunotheraphy. I would like to show that to my Japanese onc!

                  Cindy, your input too was helpful.

                  Soldier on!

                  • January 21, 2022 at 8:55 am
                  Beany
                  Participant
                    Congratulations
                    • December 29, 2021 at 9:22 am
                    Beany
                    Participant
                      Hello,
                      I had hair loss for the first six months. Then it stopped and my hair has　grown back. I also went curly!
                      • December 16, 2021 at 8:32 am
                      Beany
                      Participant
                        Sorry i do not know. Anyone?
                        • December 16, 2021 at 8:30 am
                        Beany
                        Participant
                          Well done Jenn. Great result.
                          • December 13, 2021 at 12:25 am
                          Beany
                          Participant
                            Thank you Caman,

                            I remember asking the doctor to give me Nivo or something similar when I was stage 2c and scared. He said he wasn’t allowed. Well, I went on to stage 4 after that!

                            Japan is quite a way behind North America in terms of treatment. The use of 480mg of Opdivo, which I am on, was only approved in December 2021.

                            Regards to everyone,

                             

                            • September 6, 2021 at 9:42 am
                            Beany
                            Participant
                              I had a brain met which was only found out months after my liver and lung tumors were discovered. My doctor didnt do a full body scan either.

                              <!–more–><!–more–>

                              • August 13, 2021 at 8:07 am
                              Beany
                              Participant
                                Hello,

                                I only got through three combos before having drug induced liver damage or very high AST and ALT. ALT was 748. I  was in hospital gor two months and steroids for one year.

                                I am on the single dose of opdivo now and have zero side effects.

                                Regards,

                                • May 25, 2021 at 9:40 pm
                                Beany
                                Participant
                                  Hello,

                                  I had 12 tumors in my liver and after three combo infusions, they nearly disappeared. I also had inch-long tumors in both lungs which are now gone. I am pretty sure this is a high-tumor burden. I agree with what Bubbles said: ” In my humble opinion, the data in this report is muddled with that.” My latest scans in April showed nothing visible.

                                  I only got through three infusions before my ALT went up to 748. Finally, after 6 months of high-dose steroids and MMF/ Cellphet, the doctor allowed me to start the single infusions of Opdivo. I have just completed 12 infusions as of yesterday. In fact, yesterday was my first double dosage of 480mg. My ALT is 27 and I have not felt any side effects yet but am aware they may come anytime.

                                  Beany

                                  • October 10, 2021 at 9:56 am
                                  Beany
                                  Participant
                                    Wow johnjk04, that is a wonderful outcome. Very happy for you. It  is inspiration for everyone.

                                    Christinad、I had 13 tumors in mg liver, three in my lungs and one in my brain. Last two scans shows only a scar (most likely) in my brain. I think that is what Ed described as NEAD. Lung tumors shrunk quickly–about .195 mm per day but the brain tumor was slow.

                                    Regards and best wishes,

                                    Adam

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