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Zelboraf

Forums General Melanoma Community Zelboraf

  • Post
    uccio2014
    Participant

      Hello all,

      it is the first time i write here but i follow the site dialy.

      Here my question:

      there is someone under zelboraf for a long period?

      any ned? and if so after how long? and for how long?

      how did you detect it had stop to work?

      Praying to go on  reading about all of you for years

      Antonio

    Viewing 5 reply threads
    • Replies
        odonoghue80
        Participant

          Hi, I was on Zelboraf two years ago and I had numerous tumors when I started. I stayed on Z for 13 months. Like I said, I had a lot of tumors, and after a few months, they were all gone! But the average is about 6-8 months. I actually saw a women in a group I'm in today who is still on Zelboraf for 4.5 years!  I've also seen people on forums here before of 2 years plus as well. 

          The side effects initially can be tough: skin rash, sore feet, and sore joints, and especially sun exposure. You must be extremely careful to stay out of the sunlight. If you are in the sun, you must be covered up. 

          Good luck.

            uccio2014
            Participant

              Hello and ty for your answer.

              My wife started z on august  (stage IV with mets in lungs liver intestine adn bones) and on the first scan mostly of mets disappears and all strinks. 

              We are really worry Z will stop to work and to catch this stop late (if i do not misandestud her doctor said only tac can sais that z stopped work and next tac is in 3 mounth).

              Any suggestion on early signal Z stopped to work?

              Thank's again for your help.

              uccio2014
              Participant

                Hello and ty for your answer.

                My wife started z on august  (stage IV with mets in lungs liver intestine adn bones) and on the first scan mostly of mets disappears and all strinks. 

                We are really worry Z will stop to work and to catch this stop late (if i do not misandestud her doctor said only tac can sais that z stopped work and next tac is in 3 mounth).

                Any suggestion on early signal Z stopped to work?

                Thank's again for your help.

                uccio2014
                Participant

                  Hello and ty for your answer.

                  My wife started z on august  (stage IV with mets in lungs liver intestine adn bones) and on the first scan mostly of mets disappears and all strinks. 

                  We are really worry Z will stop to work and to catch this stop late (if i do not misandestud her doctor said only tac can sais that z stopped work and next tac is in 3 mounth).

                  Any suggestion on early signal Z stopped to work?

                  Thank's again for your help.

                odonoghue80
                Participant

                  Hi, I was on Zelboraf two years ago and I had numerous tumors when I started. I stayed on Z for 13 months. Like I said, I had a lot of tumors, and after a few months, they were all gone! But the average is about 6-8 months. I actually saw a women in a group I'm in today who is still on Zelboraf for 4.5 years!  I've also seen people on forums here before of 2 years plus as well. 

                  The side effects initially can be tough: skin rash, sore feet, and sore joints, and especially sun exposure. You must be extremely careful to stay out of the sunlight. If you are in the sun, you must be covered up. 

                  Good luck.

                  odonoghue80
                  Participant

                    Hi, I was on Zelboraf two years ago and I had numerous tumors when I started. I stayed on Z for 13 months. Like I said, I had a lot of tumors, and after a few months, they were all gone! But the average is about 6-8 months. I actually saw a women in a group I'm in today who is still on Zelboraf for 4.5 years!  I've also seen people on forums here before of 2 years plus as well. 

                    The side effects initially can be tough: skin rash, sore feet, and sore joints, and especially sun exposure. You must be extremely careful to stay out of the sunlight. If you are in the sun, you must be covered up. 

                    Good luck.

                    kalisama
                    Participant

                      Hi Antonio,

                      I was on Zelbarof for nearly a year, and responded well to some brain mets and completely to 3 lung mets. Eventually I developed new brain mets and was switched to Tafinlar/Mekinist as soon as it was FDA approved. Unfortunately it did not work for me past a few months when I developed several very large brain mets. This is the biggest challenge with the BRAF inhibitors, the Brain Blood Barrier. In my research and experience, these therapies just do not work up in the brain, completely different mechanism.

                      As far as side effects, I suffered every single Zelbarof side effect one possibly could. It was no fun at all. However, when switched to Taf/Mek all those effects went away and I did not develop new ones from the new meds. 

                      Given the choice, if you are going the BRAF inhibitor route, maybe see if you are a candidate for Taf/Mek. It's a heckuva lot less pills and at least in my case, a heckuva lot less side effects.

                      Wishing you the best of health,
                      kali

                        uccio2014
                        Participant

                          Hi Kalisama,

                          fortunatelly at now my wife has not brain mets, Z looks working fine, but we are just in the 3th month.

                          and also side effect was limited (except two time we had to stop terapy).

                          Sorry to listen it did not work to you but i hope you fonded a good option.

                          uccio2014
                          Participant

                            Hi Kalisama,

                            fortunatelly at now my wife has not brain mets, Z looks working fine, but we are just in the 3th month.

                            and also side effect was limited (except two time we had to stop terapy).

                            Sorry to listen it did not work to you but i hope you fonded a good option.

                            uccio2014
                            Participant

                              Hi Kalisama,

                              fortunatelly at now my wife has not brain mets, Z looks working fine, but we are just in the 3th month.

                              and also side effect was limited (except two time we had to stop terapy).

                              Sorry to listen it did not work to you but i hope you fonded a good option.

                            kalisama
                            Participant

                              Hi Antonio,

                              I was on Zelbarof for nearly a year, and responded well to some brain mets and completely to 3 lung mets. Eventually I developed new brain mets and was switched to Tafinlar/Mekinist as soon as it was FDA approved. Unfortunately it did not work for me past a few months when I developed several very large brain mets. This is the biggest challenge with the BRAF inhibitors, the Brain Blood Barrier. In my research and experience, these therapies just do not work up in the brain, completely different mechanism.

                              As far as side effects, I suffered every single Zelbarof side effect one possibly could. It was no fun at all. However, when switched to Taf/Mek all those effects went away and I did not develop new ones from the new meds. 

                              Given the choice, if you are going the BRAF inhibitor route, maybe see if you are a candidate for Taf/Mek. It's a heckuva lot less pills and at least in my case, a heckuva lot less side effects.

                              Wishing you the best of health,
                              kali

                              kalisama
                              Participant

                                Hi Antonio,

                                I was on Zelbarof for nearly a year, and responded well to some brain mets and completely to 3 lung mets. Eventually I developed new brain mets and was switched to Tafinlar/Mekinist as soon as it was FDA approved. Unfortunately it did not work for me past a few months when I developed several very large brain mets. This is the biggest challenge with the BRAF inhibitors, the Brain Blood Barrier. In my research and experience, these therapies just do not work up in the brain, completely different mechanism.

                                As far as side effects, I suffered every single Zelbarof side effect one possibly could. It was no fun at all. However, when switched to Taf/Mek all those effects went away and I did not develop new ones from the new meds. 

                                Given the choice, if you are going the BRAF inhibitor route, maybe see if you are a candidate for Taf/Mek. It's a heckuva lot less pills and at least in my case, a heckuva lot less side effects.

                                Wishing you the best of health,
                                kali

                            Viewing 5 reply threads
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