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gloria

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      gloria
      Participant

        I am a little confused by you saying an "unknown primary".  If a "cyst" was removed and tested positive for melanoma, isn't that the primary?  And if it was "thick", didn't they give you an exact size?  Seems like the only missing link is the SNB and no lymph node involvement is known.

         

        Many people have zero side effects from yervoy.  Few have some serious ones.

         

        I am also confused about not having a tumor in order to have low dose.  I know the trials I have seen do not have that requirement.  There are three arms to the trial – interferon, low dose and high dose.  It is simply the luck of the draw as to which one you get.

         

        Personally, from all I have seen, I would choose "wait and watch" over interferon.

         

        I agree with the previous answer, yervoy is a good choice for many.

        gloria
        Participant

          I am a little confused by you saying an "unknown primary".  If a "cyst" was removed and tested positive for melanoma, isn't that the primary?  And if it was "thick", didn't they give you an exact size?  Seems like the only missing link is the SNB and no lymph node involvement is known.

           

          Many people have zero side effects from yervoy.  Few have some serious ones.

           

          I am also confused about not having a tumor in order to have low dose.  I know the trials I have seen do not have that requirement.  There are three arms to the trial – interferon, low dose and high dose.  It is simply the luck of the draw as to which one you get.

           

          Personally, from all I have seen, I would choose "wait and watch" over interferon.

           

          I agree with the previous answer, yervoy is a good choice for many.

          gloria
          Participant

            I am a little confused by you saying an "unknown primary".  If a "cyst" was removed and tested positive for melanoma, isn't that the primary?  And if it was "thick", didn't they give you an exact size?  Seems like the only missing link is the SNB and no lymph node involvement is known.

             

            Many people have zero side effects from yervoy.  Few have some serious ones.

             

            I am also confused about not having a tumor in order to have low dose.  I know the trials I have seen do not have that requirement.  There are three arms to the trial – interferon, low dose and high dose.  It is simply the luck of the draw as to which one you get.

             

            Personally, from all I have seen, I would choose "wait and watch" over interferon.

             

            I agree with the previous answer, yervoy is a good choice for many.

            gloria
            Participant

              I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

              gloria
              Participant

                I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

                gloria
                Participant

                  I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

                  gloria
                  Participant

                    I think it depends on if anyone has experience with what someone is asking.  Some things are so specific to one person only that there really can't be much of a response.  Many times, like today, I notice people are just posting a comment without really asking a question.

                    It also helps when the posts are in English!  🙂

                    gloria
                    Participant

                      I think it depends on if anyone has experience with what someone is asking.  Some things are so specific to one person only that there really can't be much of a response.  Many times, like today, I notice people are just posting a comment without really asking a question.

                      It also helps when the posts are in English!  🙂

                      gloria
                      Participant

                        I think it depends on if anyone has experience with what someone is asking.  Some things are so specific to one person only that there really can't be much of a response.  Many times, like today, I notice people are just posting a comment without really asking a question.

                        It also helps when the posts are in English!  🙂

                        gloria
                        Participant

                          Brooke – I sent you a private message.

                          gloria
                          Participant

                            Brooke – I sent you a private message.

                            gloria
                            Participant

                              Brooke – I sent you a private message.

                              gloria
                              Participant

                                Sorry you had to join us but this really is the best place for answers during such a scary time.

                                First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

                                gloria
                                Participant

                                  Sorry you had to join us but this really is the best place for answers during such a scary time.

                                  First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

                                  gloria
                                  Participant

                                    Sorry you had to join us but this really is the best place for answers during such a scary time.

                                    First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

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