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Emotional rollercoaster!
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Emotional rollercoaster!

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  • Post
    • May 7, 2014 at 8:32 pm
    evleye
    Participant

      I am so confused!

      Stage IV diagnised in January when ovary was removed and path came back.  Subsequent PET scans showed hot spots in thyroid and breast.  biopsies showed thyroid cancer and melanoma in breast.  Thyroid removed beginning of April and was to start HDIL-2 and Yervoy consecutively as part of a clinical trial.  Did the scans yesterday so I could start the trial and they show nothing.  Now I need a breast ultrasound to find the tumor.  Could be too small for trial so do I do the HDIL-2 and Yervoy anyway or wait and watch???  

       

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    • Replies
        • May 8, 2014 at 3:23 pm
        arthurjedi007
        Participant

          Sounds like you have been through a lot already. Amazing how we were in chat the other night and I had no idea what you have faced.

          If you are concerned about side affects which that trial might have and since your tumor burden at the moment is so small they cannot find it I would probably ask the doc about doing regular fda approved yervoy instead. That might tweek your immune system to keep your burden low for years and years like other people. Or in a few months or more the merck fda pd1 might be approved and it has even less side affects than yervoy. Or in several months the bms fda pd1 might be approved and it has less side affects than yervoy but not quite as few as merck's but close.

          Just some ideas. Congratulations so far and good luck.

           

            • May 8, 2014 at 5:32 pm
            evleye
            Participant

              Thanks for your input and the chat, you are fighting hard too!  Still waiting for further scan apointments.  

              • May 8, 2014 at 5:32 pm
              evleye
              Participant

                Thanks for your input and the chat, you are fighting hard too!  Still waiting for further scan apointments.  

                • May 8, 2014 at 5:32 pm
                evleye
                Participant

                  Thanks for your input and the chat, you are fighting hard too!  Still waiting for further scan apointments.  

                • May 8, 2014 at 3:23 pm
                arthurjedi007
                Participant

                  Sounds like you have been through a lot already. Amazing how we were in chat the other night and I had no idea what you have faced.

                  If you are concerned about side affects which that trial might have and since your tumor burden at the moment is so small they cannot find it I would probably ask the doc about doing regular fda approved yervoy instead. That might tweek your immune system to keep your burden low for years and years like other people. Or in a few months or more the merck fda pd1 might be approved and it has even less side affects than yervoy. Or in several months the bms fda pd1 might be approved and it has less side affects than yervoy but not quite as few as merck's but close.

                  Just some ideas. Congratulations so far and good luck.

                   

                  • May 8, 2014 at 3:23 pm
                  arthurjedi007
                  Participant

                    Sounds like you have been through a lot already. Amazing how we were in chat the other night and I had no idea what you have faced.

                    If you are concerned about side affects which that trial might have and since your tumor burden at the moment is so small they cannot find it I would probably ask the doc about doing regular fda approved yervoy instead. That might tweek your immune system to keep your burden low for years and years like other people. Or in a few months or more the merck fda pd1 might be approved and it has even less side affects than yervoy. Or in several months the bms fda pd1 might be approved and it has less side affects than yervoy but not quite as few as merck's but close.

                    Just some ideas. Congratulations so far and good luck.

                     

                Viewing 2 reply threads
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