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johnbil
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johnbil

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      • August 23, 2013 at 6:10 am
      johnbil
      Participant

        Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

        Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

        Just my experiences/opinions.

        Cheers!

        John

        • August 23, 2013 at 6:10 am
        johnbil
        Participant

          Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

          Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

          Just my experiences/opinions.

          Cheers!

          John

          • August 23, 2013 at 6:10 am
          johnbil
          Participant

            Hey there. Diagnosed Oct 2012. Currently 3c. Primary tumor on back 14mm, mitotic rate of 12. Ulcerated. Local recurrence of 7mm, just before WLE. 2 sentinel node biosies (left and right sides). 3 of 7 nodes pode (all between 1 and 3mm), 2 of 5 on one side, and 1 of 2 on the other.. Decided against complete dissections, as I really need my arms for work, and it doesn't seem to help anyway. This excluded me from trials for the moment. Was happy to watch and wait, but am doing interferon, to make my mom and gf happy. Interferon sucks, and probably won't offer much.

            Feeling great otherwise. Completely happy to watch and wait. Ok with the interferon, but wouldn't do it, if I could convince my family it is sort of pointless…

            Just my experiences/opinions.

            Cheers!

            John

            • March 7, 2013 at 10:07 pm
            johnbil
            Participant

              I can empathise, completely. Though I've only been recently diagnosed as 3C, it has definitely got me thinking about things. I don't really have a "bucket list", as I've been fortunate enough to be able to pursue everything I've ever wanted.From oyster fishing, to mountain bike racing, and many, many other pursuits. I know that I could live 30 years, and that would be the best outcome, and I will keep myself as healthy as possible , towards that end. But, I've also seen how quickly and unexpectedly things can go south. I'm trying to ease my girlfriend into thoughts of planning, while still staying positive. We've always lived for today, and loved it. I'm pissed about the diagnosis I've received. 

              • March 7, 2013 at 10:07 pm
              johnbil
              Participant

                I can empathise, completely. Though I've only been recently diagnosed as 3C, it has definitely got me thinking about things. I don't really have a "bucket list", as I've been fortunate enough to be able to pursue everything I've ever wanted.From oyster fishing, to mountain bike racing, and many, many other pursuits. I know that I could live 30 years, and that would be the best outcome, and I will keep myself as healthy as possible , towards that end. But, I've also seen how quickly and unexpectedly things can go south. I'm trying to ease my girlfriend into thoughts of planning, while still staying positive. We've always lived for today, and loved it. I'm pissed about the diagnosis I've received. 

                • March 7, 2013 at 10:07 pm
                johnbil
                Participant

                  I can empathise, completely. Though I've only been recently diagnosed as 3C, it has definitely got me thinking about things. I don't really have a "bucket list", as I've been fortunate enough to be able to pursue everything I've ever wanted.From oyster fishing, to mountain bike racing, and many, many other pursuits. I know that I could live 30 years, and that would be the best outcome, and I will keep myself as healthy as possible , towards that end. But, I've also seen how quickly and unexpectedly things can go south. I'm trying to ease my girlfriend into thoughts of planning, while still staying positive. We've always lived for today, and loved it. I'm pissed about the diagnosis I've received. 

                  • January 2, 2014 at 1:14 am
                  johnbil
                  Participant
                    3c here too. Did the high-dose, and about 16 weeks of self-injections. Worked throughout the self-injections. Stopped the drug about two months ago. Couldn’t take it anymore. I don’t regret starting interferon, and I don’t regret stopping either. January 17th will be 1-year NED…
                    • January 2, 2014 at 1:14 am
                    johnbil
                    Participant
                      3c here too. Did the high-dose, and about 16 weeks of self-injections. Worked throughout the self-injections. Stopped the drug about two months ago. Couldn’t take it anymore. I don’t regret starting interferon, and I don’t regret stopping either. January 17th will be 1-year NED…
                      • January 2, 2014 at 1:14 am
                      johnbil
                      Participant
                        3c here too. Did the high-dose, and about 16 weeks of self-injections. Worked throughout the self-injections. Stopped the drug about two months ago. Couldn’t take it anymore. I don’t regret starting interferon, and I don’t regret stopping either. January 17th will be 1-year NED…
                        • February 26, 2013 at 10:24 pm
                        johnbil
                        Participant

                          For now, they are saying that I would need to get full dissections done on both sides, to join any study, so I am just going to watch and wait. 

                          • February 26, 2013 at 10:24 pm
                          johnbil
                          Participant

                            For now, they are saying that I would need to get full dissections done on both sides, to join any study, so I am just going to watch and wait. 

                            • February 26, 2013 at 10:24 pm
                            johnbil
                            Participant

                              For now, they are saying that I would need to get full dissections done on both sides, to join any study, so I am just going to watch and wait. 

                              • February 23, 2013 at 5:17 am
                              johnbil
                              Participant

                                I did indicate that I would submit to one dissection (the "worst" side). Interesting suggestion about the injections on the other side. I will definitely foat that idea. Thanks.

                                • February 23, 2013 at 5:17 am
                                johnbil
                                Participant

                                  I did indicate that I would submit to one dissection (the "worst" side). Interesting suggestion about the injections on the other side. I will definitely foat that idea. Thanks.

                                  • February 23, 2013 at 5:17 am
                                  johnbil
                                  Participant

                                    I did indicate that I would submit to one dissection (the "worst" side). Interesting suggestion about the injections on the other side. I will definitely foat that idea. Thanks.

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