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        There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

        Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

        Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

         

         

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        Participant

          There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

          Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

          Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

           

           

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          Participant

            There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

            Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

            Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

             

             

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              Please check with your doctor regarding dosage. 

              I am on Mekinist and Tafinlar (the other combo). I started at the full dosage. Due to side effects I was reduced to a lower dosage, and then that lower dosage every other day. At first I was skeptical that it was 1/4 of the "normal", but the normal is not important. I am now 12 months on the combo, feeling great, no side effects. 

              I hear the new "normal" might actually be every other day.

              Make sure you question your doctor. Is your doctor an informed oncologist?

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              Participant

                Please check with your doctor regarding dosage. 

                I am on Mekinist and Tafinlar (the other combo). I started at the full dosage. Due to side effects I was reduced to a lower dosage, and then that lower dosage every other day. At first I was skeptical that it was 1/4 of the "normal", but the normal is not important. I am now 12 months on the combo, feeling great, no side effects. 

                I hear the new "normal" might actually be every other day.

                Make sure you question your doctor. Is your doctor an informed oncologist?

                ad2424
                Participant

                  Please check with your doctor regarding dosage. 

                  I am on Mekinist and Tafinlar (the other combo). I started at the full dosage. Due to side effects I was reduced to a lower dosage, and then that lower dosage every other day. At first I was skeptical that it was 1/4 of the "normal", but the normal is not important. I am now 12 months on the combo, feeling great, no side effects. 

                  I hear the new "normal" might actually be every other day.

                  Make sure you question your doctor. Is your doctor an informed oncologist?

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                  Participant

                    Have you discussed with your doctor taking MEK along with the Zel? Side effects are less and results are better. I am only 1 but have had no joint pain on both.

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                    Participant

                      Have you discussed with your doctor taking MEK along with the Zel? Side effects are less and results are better. I am only 1 but have had no joint pain on both.

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                      Participant

                        Have you discussed with your doctor taking MEK along with the Zel? Side effects are less and results are better. I am only 1 but have had no joint pain on both.

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                        Participant

                          Hi Kim

                          Congrats on your 3 years and being in the 6% club.I'm always happy to hear of an IL-2 success story.

                          I did IL-2 almost 2 years ago, and although not in your club, I have achieved almost stability of my lung nodules after VAT.

                          Steven

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                            Hi Kim

                            Congrats on your 3 years and being in the 6% club.I'm always happy to hear of an IL-2 success story.

                            I did IL-2 almost 2 years ago, and although not in your club, I have achieved almost stability of my lung nodules after VAT.

                            Steven

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                            Participant

                              Hi Kim

                              Congrats on your 3 years and being in the 6% club.I'm always happy to hear of an IL-2 success story.

                              I did IL-2 almost 2 years ago, and although not in your club, I have achieved almost stability of my lung nodules after VAT.

                              Steven

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                              Participant

                                Thanks for your reply. I wish I was NED. I'm stable for about a year and a half with multiple nodules on both lungs.

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                                Participant

                                  Thanks for your reply. I wish I was NED. I'm stable for about a year and a half with multiple nodules on both lungs.

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                                  Participant

                                    Thanks for your reply. I wish I was NED. I'm stable for about a year and a half with multiple nodules on both lungs.

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