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Off Zelboraf for a few weeks

Forums General Melanoma Community Off Zelboraf for a few weeks

  • Post

    I had a pet scan yesterday and all was ok.  After being on Z for 27 months I will be off it for 2 weeks due to that Q-T cardiac wave……getting way to far part.  We will evaluate in 2 weeks and see what is next.  I am thinking if the Q-T wave gets better …maybe a lower dose of the Zelboraf.  If not we will proceed from there  I have been very fortunate with the Zelboraf  getting rid of the mel in my pancreas and other areas.  So       we will see what the future brings.  Thank goodness I had cardiograms every month.. Best wishes.

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  • Replies
      POW
      Participant

        Your PET scan was "all OK"? That's wonderful news, Mary! Good for you! 

        A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist. 

        Meanwhile, congratulations on your wonderful success! You go, girl!

        POW
        Participant

          Your PET scan was "all OK"? That's wonderful news, Mary! Good for you! 

          A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist. 

          Meanwhile, congratulations on your wonderful success! You go, girl!

          POW
          Participant

            Your PET scan was "all OK"? That's wonderful news, Mary! Good for you! 

            A lot of people go off Zelboraf for a few weeks to allow side effects to calm down. After all this time, it probably makes you nervous to stop, but you will probably be fine. Have you considered switching to Tafinlar + Mekinist? I know that, in general, the combo usually has fewer side effects than does Zelboraf but I don't know about heart-related side effects specifically. This is something that you might want to discuss with your oncologist. 

            Meanwhile, congratulations on your wonderful success! You go, girl!

              Thank you for your encouragement.  I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks.  The prolongation of the Q-T waves was just short of 500.  That means I must get that situation under control or get on RX. to take care of it.  I am hoping the 2 week vacation will take care of it.  You did hit " the nail on the head."   It makes me very nervous to stop the Zelboraf.  I am concerned the mel will               return to my pancreas with vengeance!  It disappeared 27 months ago along with other lesions on my liver and behind the knee.  I was first diagnosed with mel in 1988.  I spent many years in wonderful ignorance.    Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials)  on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs.   I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent.   My best to you and your family.

              NYKaren
              Participant

                I hope your Zel vacation works for you, Mary. I know that anxiety well.  Meanwhile, congratulations on the great results!  I'm "stable" and it's hard to remember that that's a good thing. 

                All the best,

                karen

                Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing.    We share a few things in common, one of which is the breast cancer.   Now, the Yankees are a different story. LOL, A hug to you my sister.

                Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing.    We share a few things in common, one of which is the breast cancer.   Now, the Yankees are a different story. LOL, A hug to you my sister.

                Thank you, Karen…I also send you goodness and strength for what you are going through. The new normal is a very strange thing.    We share a few things in common, one of which is the breast cancer.   Now, the Yankees are a different story. LOL, A hug to you my sister.

                NYKaren
                Participant

                  I hope your Zel vacation works for you, Mary. I know that anxiety well.  Meanwhile, congratulations on the great results!  I'm "stable" and it's hard to remember that that's a good thing. 

                  All the best,

                  karen

                  NYKaren
                  Participant

                    I hope your Zel vacation works for you, Mary. I know that anxiety well.  Meanwhile, congratulations on the great results!  I'm "stable" and it's hard to remember that that's a good thing. 

                    All the best,

                    karen

                    Thank you for your encouragement.  I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks.  The prolongation of the Q-T waves was just short of 500.  That means I must get that situation under control or get on RX. to take care of it.  I am hoping the 2 week vacation will take care of it.  You did hit " the nail on the head."   It makes me very nervous to stop the Zelboraf.  I am concerned the mel will               return to my pancreas with vengeance!  It disappeared 27 months ago along with other lesions on my liver and behind the knee.  I was first diagnosed with mel in 1988.  I spent many years in wonderful ignorance.    Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials)  on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs.   I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent.   My best to you and your family.

                    Thank you for your encouragement.  I will keep the Tafinlar, Mekinist combo in mind when I go back in 2 weeks.  The prolongation of the Q-T waves was just short of 500.  That means I must get that situation under control or get on RX. to take care of it.  I am hoping the 2 week vacation will take care of it.  You did hit " the nail on the head."   It makes me very nervous to stop the Zelboraf.  I am concerned the mel will               return to my pancreas with vengeance!  It disappeared 27 months ago along with other lesions on my liver and behind the knee.  I was first diagnosed with mel in 1988.  I spent many years in wonderful ignorance.    Then it visited my lung…surg. took care of that and i went on GMCSF. (can't believe I have actually forgotten those initials)  on the injections for 2 years…then i got breathing problems from the medication. the increased white cells' played' with my lungs.   I have been very fortunate..side effects, side effects……including diarrhea for about 27 months,,better with the help of Lomotil. wow, I really did give you TMI…..thanks for the vent.   My best to you and your family.

                  JerryfromFauq
                  Participant

                    Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average.  This was one to two years ago.  My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.

                    JerryfromFauq
                    Participant

                      Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average.  This was one to two years ago.  My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.

                        Hi Jerry, I seem to remember that also.  Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z.   I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.

                        Hi Jerry, I seem to remember that also.  Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z.   I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.

                        Hi Jerry, I seem to remember that also.  Something for me to recall when I get those "ebee gebees" about recurrence while I am off the Z.   I will also mention it to the Dr. when I return for the follow up. thank you for reminding me.

                      JerryfromFauq
                      Participant

                        Mary, I read a while back about a trial where they were pausing the BRAF inhibitor on a regular bails to see if the stop-wait-start cycling would actually increase the length of time that the inhibators would continue be be effective on the average.  This was one to two years ago.  My impression is that it was working, but I have not seen any final report.The thought was that by pausing the administration the disease would stop on developing a work around and then when it relaxed, get hit again.

                        BrianP
                        Participant

                          Mary,

                          Congrats on your 27 months success with Zelboraf.  I'll keep you in my prayers over the next couple weeks.  Hope the Q-T waves get better.  You are certainly a model of persistence and strength battling this awful disease since 1988.

                          Brian

                          BrianP
                          Participant

                            Mary,

                            Congrats on your 27 months success with Zelboraf.  I'll keep you in my prayers over the next couple weeks.  Hope the Q-T waves get better.  You are certainly a model of persistence and strength battling this awful disease since 1988.

                            Brian

                            BrianP
                            Participant

                              Mary,

                              Congrats on your 27 months success with Zelboraf.  I'll keep you in my prayers over the next couple weeks.  Hope the Q-T waves get better.  You are certainly a model of persistence and strength battling this awful disease since 1988.

                              Brian

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