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Question? Anyone take Zelboraf and…..
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Question? Anyone take Zelboraf and…..

› Forums › General Melanoma Community › Question? Anyone take Zelboraf and…..

  • Post
    • August 23, 2012 at 1:37 pm
    rrrule32
    Participant

      Has anybody here taken Zelboraf, stopped because of side effects, and restart the Zelboraf and have it not work?

      My fiance is stopping Zelboraf for a small amount of time in order to let her nausea pass.  The Zelboraf has been working.  A part of me is worried that when she goes back on that it all of a sudden won't work.

      Anyone have this issue?

      Thank you,

      Travis

      Has anybody here taken Zelboraf, stopped because of side effects, and restart the Zelboraf and have it not work?

      My fiance is stopping Zelboraf for a small amount of time in order to let her nausea pass.  The Zelboraf has been working.  A part of me is worried that when she goes back on that it all of a sudden won't work.

      Anyone have this issue?

      Thank you,

      Travis

    Viewing 5 reply threads
    • Replies
        • August 23, 2012 at 3:53 pm
        aldakota22
        Participant

          How  long has she been on "Z".? How serious are her side effects? What is her overall condition before the "Z"? How effective has Z" been for her.How short a period will she be off the drug?  All questions needed to know to make a judgement call.Drug is so new I do not think anyone really knows ?Beat the Beast.    Al

          • August 23, 2012 at 3:53 pm
          aldakota22
          Participant

            How  long has she been on "Z".? How serious are her side effects? What is her overall condition before the "Z"? How effective has Z" been for her.How short a period will she be off the drug?  All questions needed to know to make a judgement call.Drug is so new I do not think anyone really knows ?Beat the Beast.    Al

            • August 23, 2012 at 3:53 pm
            aldakota22
            Participant

              How  long has she been on "Z".? How serious are her side effects? What is her overall condition before the "Z"? How effective has Z" been for her.How short a period will she be off the drug?  All questions needed to know to make a judgement call.Drug is so new I do not think anyone really knows ?Beat the Beast.    Al

              • August 23, 2012 at 4:00 pm
              aldakota22
              Participant

                Did they try a reduced doseage for a period to get the nausea  more under control for her?Some patients try that as an option to work there way slowly back to full dose.Sometimes these side effects are temporary .They go away for awhile only to  reappear months later. Beat the Beast> Al

                  • August 23, 2012 at 4:07 pm
                  awillett1991
                  Participant
                    I’ve been off 2 weeks once, and several times for a 2-3 day stretch. I seem to be fine for awhile then side effects. (different each time) will build up to the point I can’t function, will go off for a few days, then go back on and be fine. Except for the first wk I have been on 3 pills twice a day. Was told in June it’s working. My onc has a patient one week on/ one week off for side effects and says she is doing great. Supposedly the drug has a long half life and stays in your system a couple of wks.
                    • August 23, 2012 at 7:32 pm
                    rrrule32
                    Participant

                      Thank you for your responses.  I keep thinking that it would be best to alternate maybe one month on, then off one month or 3 weeks to let the melanoma cell use the BRAF protein again.  My thinking is to do this so it doesn't find a new pathway, so that it thinks it can use the BRAF protein without having to search for a different path.  Basically, tricking it.  Instead of "choking" it for 6 straight months.

                      She has been taking the Zel for a month.  She will be off for a few days.  Her nausea has been pretty bad, hasn't been able to hold anything down.  All of the noticeable tumors on her body have shrunk considerably. 

                      I'm mainly just curious if anyone has had the problem where after they go back on Zelboraf, if it all of a sudden doesn't work like it did before they stopped due to side effects.

                      • August 23, 2012 at 7:32 pm
                      rrrule32
                      Participant

                        Thank you for your responses.  I keep thinking that it would be best to alternate maybe one month on, then off one month or 3 weeks to let the melanoma cell use the BRAF protein again.  My thinking is to do this so it doesn't find a new pathway, so that it thinks it can use the BRAF protein without having to search for a different path.  Basically, tricking it.  Instead of "choking" it for 6 straight months.

                        She has been taking the Zel for a month.  She will be off for a few days.  Her nausea has been pretty bad, hasn't been able to hold anything down.  All of the noticeable tumors on her body have shrunk considerably. 

                        I'm mainly just curious if anyone has had the problem where after they go back on Zelboraf, if it all of a sudden doesn't work like it did before they stopped due to side effects.

                        • August 23, 2012 at 7:32 pm
                        rrrule32
                        Participant

                          Thank you for your responses.  I keep thinking that it would be best to alternate maybe one month on, then off one month or 3 weeks to let the melanoma cell use the BRAF protein again.  My thinking is to do this so it doesn't find a new pathway, so that it thinks it can use the BRAF protein without having to search for a different path.  Basically, tricking it.  Instead of "choking" it for 6 straight months.

                          She has been taking the Zel for a month.  She will be off for a few days.  Her nausea has been pretty bad, hasn't been able to hold anything down.  All of the noticeable tumors on her body have shrunk considerably. 

                          I'm mainly just curious if anyone has had the problem where after they go back on Zelboraf, if it all of a sudden doesn't work like it did before they stopped due to side effects.

                          • August 23, 2012 at 7:39 pm
                          rrrule32
                          Participant

                            awillett, can you tell me how long you've been on Zel?

                            Do you know how long that girl has been on Zel that you speak of in your post?

                            Thank you,

                            Travis

                            • August 23, 2012 at 7:39 pm
                            rrrule32
                            Participant

                              awillett, can you tell me how long you've been on Zel?

                              Do you know how long that girl has been on Zel that you speak of in your post?

                              Thank you,

                              Travis

                              • August 24, 2012 at 1:26 am
                              awillett1991
                              Participant
                                You can check my profile for the full scoop. I don’t know anything else about the other patient, sorry. Nothing I tried helped with nausea, i chewed alot of gum, but it has completely passed for me. I also have trouble with Zel completely killing my appetite but was put on Megace ES and now have put back on all the weight with no side effects. Hope this helps.
                                • August 24, 2012 at 1:26 am
                                awillett1991
                                Participant
                                  You can check my profile for the full scoop. I don’t know anything else about the other patient, sorry. Nothing I tried helped with nausea, i chewed alot of gum, but it has completely passed for me. I also have trouble with Zel completely killing my appetite but was put on Megace ES and now have put back on all the weight with no side effects. Hope this helps.
                                  • August 24, 2012 at 1:26 am
                                  awillett1991
                                  Participant
                                    You can check my profile for the full scoop. I don’t know anything else about the other patient, sorry. Nothing I tried helped with nausea, i chewed alot of gum, but it has completely passed for me. I also have trouble with Zel completely killing my appetite but was put on Megace ES and now have put back on all the weight with no side effects. Hope this helps.
                                    • August 23, 2012 at 7:39 pm
                                    rrrule32
                                    Participant

                                      awillett, can you tell me how long you've been on Zel?

                                      Do you know how long that girl has been on Zel that you speak of in your post?

                                      Thank you,

                                      Travis

                                      • August 23, 2012 at 4:07 pm
                                      awillett1991
                                      Participant
                                        I’ve been off 2 weeks once, and several times for a 2-3 day stretch. I seem to be fine for awhile then side effects. (different each time) will build up to the point I can’t function, will go off for a few days, then go back on and be fine. Except for the first wk I have been on 3 pills twice a day. Was told in June it’s working. My onc has a patient one week on/ one week off for side effects and says she is doing great. Supposedly the drug has a long half life and stays in your system a couple of wks.
                                        • August 23, 2012 at 4:07 pm
                                        awillett1991
                                        Participant
                                          I’ve been off 2 weeks once, and several times for a 2-3 day stretch. I seem to be fine for awhile then side effects. (different each time) will build up to the point I can’t function, will go off for a few days, then go back on and be fine. Except for the first wk I have been on 3 pills twice a day. Was told in June it’s working. My onc has a patient one week on/ one week off for side effects and says she is doing great. Supposedly the drug has a long half life and stays in your system a couple of wks.
                                        • August 23, 2012 at 4:00 pm
                                        aldakota22
                                        Participant

                                          Did they try a reduced doseage for a period to get the nausea  more under control for her?Some patients try that as an option to work there way slowly back to full dose.Sometimes these side effects are temporary .They go away for awhile only to  reappear months later. Beat the Beast> Al

                                          • August 23, 2012 at 4:00 pm
                                          aldakota22
                                          Participant

                                            Did they try a reduced doseage for a period to get the nausea  more under control for her?Some patients try that as an option to work there way slowly back to full dose.Sometimes these side effects are temporary .They go away for awhile only to  reappear months later. Beat the Beast> Al

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