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Beany

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      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,

        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!

          Beany
          Participant
            Congratulations
            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!
              Beany
              Participant
                Sorry i do not know. Anyone?
                Beany
                Participant
                  Well done Jenn. Great result.
                  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,

                     

                    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–>

                      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,

                        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

                          Beany
                          Participant
                            Thanks to everyone for your replies and encouragement. Very good of you all. Wishing you a merry Christmas and   happy new year.

                            Sincerely

                            Beany
                            Participant
                              Hello tkoss,

                              Thanks for your comments. Luckily no side effects yet, but I am aware that they may come anytime.

                               

                              Regards,

                              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

                                Beany
                                Participant
                                  Thanks for your input and advice Melanie and Ed. During my stay in hospital, Melanie told me about her experience which is very similar to mine. Thank you again Melanie.
                                  Today the ALT went down to 66 and the doctor cut the prednisone to 30mg.
                                  Have been on prednisone for five months now.
                                  Afam
                                  Beany
                                  Participant
                                    Thanks for your input and advice Melanie and Ed. During my stay in hospital, Melanie told me about her experience which is very similar to mine. Thank you again Melanie.
                                    Today the ALT went down to 66 and the doctor cut the prednisone to 30mg.
                                    Have been on prednisone for five months now.
                                    Afam
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