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      • February 16, 2017 at 6:20 am
      slouttit
      Participant

        I am also stage 3a and live in Canada.  I was offered the same trial, I believe, comparing HDI to Pembro.  IPI  is not yet approved in Canada for stage 3 so it wasn't offered in this trial as standard of care.  Therefore given a 50/50 chance of getting the newer drug, Pembro, I entered the trial.  Unfortunately I drew the HDI arm.  I only made it through 5 days of HDI as I couldn't handle the side effects.  So now I'm being watched closely and am feeling like this is a good path forward for now.  Needless to say, if I were you I'd go for the trial and hope you get on pembro. Tough call I know.  

        • February 16, 2017 at 6:20 am
        slouttit
        Participant

          I am also stage 3a and live in Canada.  I was offered the same trial, I believe, comparing HDI to Pembro.  IPI  is not yet approved in Canada for stage 3 so it wasn't offered in this trial as standard of care.  Therefore given a 50/50 chance of getting the newer drug, Pembro, I entered the trial.  Unfortunately I drew the HDI arm.  I only made it through 5 days of HDI as I couldn't handle the side effects.  So now I'm being watched closely and am feeling like this is a good path forward for now.  Needless to say, if I were you I'd go for the trial and hope you get on pembro. Tough call I know.  

          • November 16, 2016 at 4:40 am
          slouttit
          Participant

            Hi Sole,

            Tough decision.  I chose the CNLD and clinical trial of Pembro or interferon in Vancouver.  That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic.   However I drew the interferon arm and only lasted a week.  But you may have better luck.  Of course the downside is having the CNLD.  Can't advise on that one.  It was tough but I got through it.  Just my thoughts.  Good luck.

            Stacie

            • November 16, 2016 at 4:40 am
            slouttit
            Participant

              Hi Sole,

              Tough decision.  I chose the CNLD and clinical trial of Pembro or interferon in Vancouver.  That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic.   However I drew the interferon arm and only lasted a week.  But you may have better luck.  Of course the downside is having the CNLD.  Can't advise on that one.  It was tough but I got through it.  Just my thoughts.  Good luck.

              Stacie

              • November 16, 2016 at 4:40 am
              slouttit
              Participant

                Hi Sole,

                Tough decision.  I chose the CNLD and clinical trial of Pembro or interferon in Vancouver.  That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic.   However I drew the interferon arm and only lasted a week.  But you may have better luck.  Of course the downside is having the CNLD.  Can't advise on that one.  It was tough but I got through it.  Just my thoughts.  Good luck.

                Stacie

                • November 13, 2016 at 3:52 am
                slouttit
                Participant

                  I meant to say CNLD. Not cold.

                  • November 13, 2016 at 3:52 am
                  slouttit
                  Participant

                    I meant to say CNLD. Not cold.

                    • November 13, 2016 at 3:52 am
                    slouttit
                    Participant

                      I meant to say CNLD. Not cold.

                      • November 12, 2016 at 3:07 pm
                      slouttit
                      Participant

                        Hi Lisa,

                        About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                        Stacie

                        • November 12, 2016 at 3:07 pm
                        slouttit
                        Participant

                          Hi Lisa,

                          About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                          Stacie

                          • November 12, 2016 at 3:07 pm
                          slouttit
                          Participant

                            Hi Lisa,

                            About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                            Stacie

                            • November 12, 2016 at 3:02 pm
                            slouttit
                            Participant

                              Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                              • November 12, 2016 at 3:02 pm
                              slouttit
                              Participant

                                Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                                • November 12, 2016 at 3:02 pm
                                slouttit
                                Participant

                                  Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                                  • November 12, 2016 at 2:58 pm
                                  slouttit
                                  Participant

                                    Hi Sole

                                    My wait time before WLE and SNLB was closer to 10 weeks.  However my surgeon was excellent.  As for US treatment I'm assuming it would be out of pocket and prohibitively expensive.  I'm not even sure IPI is right for  me as I hear some US oncologists are reluctant to prescribe  it.  But worth looking into.

                                    stacie

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