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Length of time on Zelboraf

Forums General Melanoma Community Length of time on Zelboraf

  • Post
    Bruce Davis
    Participant

      Feel like I'm fortunate to have been on zelboraf for 3 years with minimal side-effects although I seem to be a lot weeker with increased diarrhea lately. CT after CT show no growth in lung nodules after they shrunk by 10 X.

      It just seems that people are either changing to different medicine for better results  or that Zelboraf becomes toxic.                                                                                                                                                                                                  

      Myquestions are:  1. How long do people survive on Zelboraf?

                                    2. What 's the next drug that works when your body has been warn down by Zelboraf?

       

      Bruce 

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    • Replies
        kalisama
        Participant

          Hi Bruce,

          I don't think there are concrete answers to either of your questions. I'm sure there are survival and NED studies on Zelbarof.

          I'm amazed that you have been on it as long as you have, I haven't heard of such long term use before.

          My own experience is that I was on Z for 6 or 7 months. I suffered just about every possible side effect one could with this med. On development of my first met, my onc switched me to Tafinlar/Mekenist which had just been approved by FDA. I have had virtually no side effects with this combo, but have recently developed several new mets. I see my onc this Monday and I am uncertain of what route we will end up taking.

          I know I didn't answer your questions, but I do hope my story is of some help to you.

          Wishing you the best of health,
          kali

          kalisama
          Participant

            Hi Bruce,

            I don't think there are concrete answers to either of your questions. I'm sure there are survival and NED studies on Zelbarof.

            I'm amazed that you have been on it as long as you have, I haven't heard of such long term use before.

            My own experience is that I was on Z for 6 or 7 months. I suffered just about every possible side effect one could with this med. On development of my first met, my onc switched me to Tafinlar/Mekenist which had just been approved by FDA. I have had virtually no side effects with this combo, but have recently developed several new mets. I see my onc this Monday and I am uncertain of what route we will end up taking.

            I know I didn't answer your questions, but I do hope my story is of some help to you.

            Wishing you the best of health,
            kali

            kalisama
            Participant

              Hi Bruce,

              I don't think there are concrete answers to either of your questions. I'm sure there are survival and NED studies on Zelbarof.

              I'm amazed that you have been on it as long as you have, I haven't heard of such long term use before.

              My own experience is that I was on Z for 6 or 7 months. I suffered just about every possible side effect one could with this med. On development of my first met, my onc switched me to Tafinlar/Mekenist which had just been approved by FDA. I have had virtually no side effects with this combo, but have recently developed several new mets. I see my onc this Monday and I am uncertain of what route we will end up taking.

              I know I didn't answer your questions, but I do hope my story is of some help to you.

              Wishing you the best of health,
              kali

              JerryfromFauq
              Participant

                I have known people that have been on it for 7 years.  About 50% of the people that start it or off at by the 1 year point.   It is unknown how l long  the Zel can continue to be successful in any one individual.  I am on a C-kit targeted chemo for C-KIT cancers (not FDA approved for Melanoma)/  I have know people that it never started working on.  I have known others that it stopped working on in a few as two months after starting to work.  i know other people with other c-kit cancers that have been taking it for over 13 years.  I have been on it for over 5 years.  The statistical bases for these newer drugs are still being developed.  The one thing to remember is that You OR I are not statistics.  WE are individuals.  Time will tell, statistical figures will not tell for an individual.

                JerryfromFauq
                Participant

                  I have known people that have been on it for 7 years.  About 50% of the people that start it or off at by the 1 year point.   It is unknown how l long  the Zel can continue to be successful in any one individual.  I am on a C-kit targeted chemo for C-KIT cancers (not FDA approved for Melanoma)/  I have know people that it never started working on.  I have known others that it stopped working on in a few as two months after starting to work.  i know other people with other c-kit cancers that have been taking it for over 13 years.  I have been on it for over 5 years.  The statistical bases for these newer drugs are still being developed.  The one thing to remember is that You OR I are not statistics.  WE are individuals.  Time will tell, statistical figures will not tell for an individual.

                  JerryfromFauq
                  Participant

                    I have known people that have been on it for 7 years.  About 50% of the people that start it or off at by the 1 year point.   It is unknown how l long  the Zel can continue to be successful in any one individual.  I am on a C-kit targeted chemo for C-KIT cancers (not FDA approved for Melanoma)/  I have know people that it never started working on.  I have known others that it stopped working on in a few as two months after starting to work.  i know other people with other c-kit cancers that have been taking it for over 13 years.  I have been on it for over 5 years.  The statistical bases for these newer drugs are still being developed.  The one thing to remember is that You OR I are not statistics.  WE are individuals.  Time will tell, statistical figures will not tell for an individual.

                    jmmm
                    Participant

                      We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

                        JerryfromFauq
                        Participant

                          Jmmm, do some research on the interruption trials they are doing on Zeal.  It looks like temporally interrupting Zel and resuming may actually extend how long the Zel will continue to provide a benefit to BRAF melanoma patients.

                          JerryfromFauq
                          Participant

                            Jmmm, do some research on the interruption trials they are doing on Zeal.  It looks like temporally interrupting Zel and resuming may actually extend how long the Zel will continue to provide a benefit to BRAF melanoma patients.

                            JerryfromFauq
                            Participant

                              Jmmm, do some research on the interruption trials they are doing on Zeal.  It looks like temporally interrupting Zel and resuming may actually extend how long the Zel will continue to provide a benefit to BRAF melanoma patients.

                            jmmm
                            Participant

                              We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

                              jmmm
                              Participant

                                We have been wondering this exact same thing.  My husband will have been on Zelbiraf for 3 years in October.  A little off and on due to medical stuff…surgeries, kidney issues, liver issues, but mostly on the entire time.  He deals with the joint pain, extreme sun sensitivity, and diarrhea.  He's been NED for  a little more than 2 years.  His oncologist has encouraged him to stop taking it to see what happens.  He is not comfortable with that, so he keeps taking it and waits for something to changel.  I think PD-1 will be his next choice (he had Ipi prior to Zelboraf and it worked for a couple of months before he progressed).

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