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bad mixed results after 4 months on zelboraf

Forums General Melanoma Community bad mixed results after 4 months on zelboraf

  • Post
    Laurie from maine
    Participant

      Just came from doctor with scan results from 4 months on zelboraf.  Liver tumor continues to decrease, lungs have stayed same.  But intestines now have two big tumors wrapping around them growing quickly. πŸ™   I go tonite for MRI and thurs for PET scan.  Plan as of now is surgery asap to remove two intestinal tumors, meanwhile staying on zelboraf until surgery (dr is checking on whether to stay on or not) and then figure out what plan I go with from there.  I am going to be hopeful/optimistic as I sailed thru the last intestinal surgery and was out of

      Just came from doctor with scan results from 4 months on zelboraf.  Liver tumor continues to decrease, lungs have stayed same.  But intestines now have two big tumors wrapping around them growing quickly. πŸ™   I go tonite for MRI and thurs for PET scan.  Plan as of now is surgery asap to remove two intestinal tumors, meanwhile staying on zelboraf until surgery (dr is checking on whether to stay on or not) and then figure out what plan I go with from there.  I am going to be hopeful/optimistic as I sailed thru the last intestinal surgery and was out of hospital in 4 days and walking around fine.  Doctor said sometimes each area of the body reacts differently to the drugs, and he is hoping that the stomach/intestine is only area that didnt react to Zelboraf. But guessing he is also thinking if I am strong enough after surgery we go to ippi or interleukin?    I am guessing plans might change depending on mri and pet results

      wish me luck – keeping strong thoughts and staying strong not going to let this knock me down.

      laurie from maine. 

    Viewing 14 reply threads
    • Replies
        boot2aboot
        Participant

          Lauri,

          i did not think that was possible! to have some tumors respond while one grows new ones…i am sorry to hear this…especially since all of us on zelboraf are kicked out of braf-mek trials…

          boots

          boot2aboot
          Participant

            Lauri,

            i did not think that was possible! to have some tumors respond while one grows new ones…i am sorry to hear this…especially since all of us on zelboraf are kicked out of braf-mek trials…

            boots

            boot2aboot
            Participant

              Lauri,

              i did not think that was possible! to have some tumors respond while one grows new ones…i am sorry to hear this…especially since all of us on zelboraf are kicked out of braf-mek trials…

              boots

              jmmm
              Participant
                My husband just had surgery while on Zelboraf. He had strict orders from his doctor to stop the Zelboraf a full 5 days before surgery and not start for 5 days after. Since it’s such a new drug, they’re not too sure on drug interactions and wanted to play it safe.
                jmmm
                Participant
                  My husband just had surgery while on Zelboraf. He had strict orders from his doctor to stop the Zelboraf a full 5 days before surgery and not start for 5 days after. Since it’s such a new drug, they’re not too sure on drug interactions and wanted to play it safe.
                  jmmm
                  Participant
                    My husband just had surgery while on Zelboraf. He had strict orders from his doctor to stop the Zelboraf a full 5 days before surgery and not start for 5 days after. Since it’s such a new drug, they’re not too sure on drug interactions and wanted to play it safe.
                    hope4cure1
                    Participant

                      Hi Laurie.  I will certainly keep up the good thoughts for you.  You definitely have the right attitude, and that is the strongest medicine in the world!

                      Hope

                        boot2aboot
                        Participant

                          oh Laurie,

                          i forgot to mention surgeries while on zelboraf…i was told to stop 2 days prior and 3 days after my kidney stent removal…

                          boots

                          i can't get over the idea that your melanoma mutated in some areas while in other areas did not…i just thought it would be across the board…

                          we are bounced out of braf-mek trials…i am looking at several anti-pd1 trials

                          boots

                          Laurie from maine
                          Participant

                            hi,

                            thank you for your responses.  Yes the doctor said it was very unusual to have a mixed response and was going to talk to other doctors to see what their thoughts were on whether I stayed on zelboraf or not.  Thank you good to know that you stopped zelboraf several days before surgery, my doctor thought so also.  I think the key is going to be MRI and PET results to make sure/hope that there isnt growth anywhere else.

                            thank you all for your help and thoughts

                            laurie from maine

                            Laurie from maine
                            Participant

                              hi,

                              thank you for your responses.  Yes the doctor said it was very unusual to have a mixed response and was going to talk to other doctors to see what their thoughts were on whether I stayed on zelboraf or not.  Thank you good to know that you stopped zelboraf several days before surgery, my doctor thought so also.  I think the key is going to be MRI and PET results to make sure/hope that there isnt growth anywhere else.

                              thank you all for your help and thoughts

                              laurie from maine

                              deardad
                              Participant

                                Hi Laurie,

                                Sorry to hear that you've had a mixed result and I hope your next results are good news. It's so weird that some can go on this drug for over a years and others only months. I'd have plan B ready go just in case, I am also looking into antipd trials in Australia for my dad when Zelboraf stops working.

                                Take care

                                Nahmi from Melbourne

                                deardad
                                Participant

                                  Hi Laurie,

                                  Sorry to hear that you've had a mixed result and I hope your next results are good news. It's so weird that some can go on this drug for over a years and others only months. I'd have plan B ready go just in case, I am also looking into antipd trials in Australia for my dad when Zelboraf stops working.

                                  Take care

                                  Nahmi from Melbourne

                                  deardad
                                  Participant

                                    Hi Laurie,

                                    Sorry to hear that you've had a mixed result and I hope your next results are good news. It's so weird that some can go on this drug for over a years and others only months. I'd have plan B ready go just in case, I am also looking into antipd trials in Australia for my dad when Zelboraf stops working.

                                    Take care

                                    Nahmi from Melbourne

                                    Laurie from maine
                                    Participant

                                      hi,

                                      thank you for your responses.  Yes the doctor said it was very unusual to have a mixed response and was going to talk to other doctors to see what their thoughts were on whether I stayed on zelboraf or not.  Thank you good to know that you stopped zelboraf several days before surgery, my doctor thought so also.  I think the key is going to be MRI and PET results to make sure/hope that there isnt growth anywhere else.

                                      thank you all for your help and thoughts

                                      laurie from maine

                                      boot2aboot
                                      Participant

                                        oh Laurie,

                                        i forgot to mention surgeries while on zelboraf…i was told to stop 2 days prior and 3 days after my kidney stent removal…

                                        boots

                                        i can't get over the idea that your melanoma mutated in some areas while in other areas did not…i just thought it would be across the board…

                                        we are bounced out of braf-mek trials…i am looking at several anti-pd1 trials

                                        boots

                                        boot2aboot
                                        Participant

                                          oh Laurie,

                                          i forgot to mention surgeries while on zelboraf…i was told to stop 2 days prior and 3 days after my kidney stent removal…

                                          boots

                                          i can't get over the idea that your melanoma mutated in some areas while in other areas did not…i just thought it would be across the board…

                                          we are bounced out of braf-mek trials…i am looking at several anti-pd1 trials

                                          boots

                                        hope4cure1
                                        Participant

                                          Hi Laurie.  I will certainly keep up the good thoughts for you.  You definitely have the right attitude, and that is the strongest medicine in the world!

                                          Hope

                                          hope4cure1
                                          Participant

                                            Hi Laurie.  I will certainly keep up the good thoughts for you.  You definitely have the right attitude, and that is the strongest medicine in the world!

                                            Hope

                                            Charlie S
                                            Participant

                                              Actually, because Zelboraf is a inhibitor/pathway drug, odd as it sounds, I would consider this good news and not bad news considering what the drug is designed to do.

                                              Why?  Liver mets are decreasing, lungs staying the same but something new in the intestine.  So to me, that means Zelboraf has shut down or is shutting down or holding two pathways, but that sneaky melanoma found a work around via a new pathway to the intestines…………..so Zel is two for three.

                                              That ain't bad.

                                              Just an opinion and I do wish you luck.

                                              Charlie S

                                              .

                                              Charlie S
                                              Participant

                                                Actually, because Zelboraf is a inhibitor/pathway drug, odd as it sounds, I would consider this good news and not bad news considering what the drug is designed to do.

                                                Why?  Liver mets are decreasing, lungs staying the same but something new in the intestine.  So to me, that means Zelboraf has shut down or is shutting down or holding two pathways, but that sneaky melanoma found a work around via a new pathway to the intestines…………..so Zel is two for three.

                                                That ain't bad.

                                                Just an opinion and I do wish you luck.

                                                Charlie S

                                                .

                                                  Laurie from maine
                                                  Participant

                                                    Hi Charlie,

                                                    thank you for your optimistic thoughts.  I think my doctor is asking others what they think about whether I should stay on zelboraf or not after surgery.  Holding breath right now that brain MRI and PET scan do not show anything else. 

                                                    thank you

                                                    laurie from maine πŸ™‚

                                                    Laurie from maine
                                                    Participant

                                                      Hi Charlie,

                                                      thank you for your optimistic thoughts.  I think my doctor is asking others what they think about whether I should stay on zelboraf or not after surgery.  Holding breath right now that brain MRI and PET scan do not show anything else. 

                                                      thank you

                                                      laurie from maine πŸ™‚

                                                      Laurie from maine
                                                      Participant

                                                        Hi Charlie,

                                                        thank you for your optimistic thoughts.  I think my doctor is asking others what they think about whether I should stay on zelboraf or not after surgery.  Holding breath right now that brain MRI and PET scan do not show anything else. 

                                                        thank you

                                                        laurie from maine πŸ™‚

                                                      Charlie S
                                                      Participant

                                                        Actually, because Zelboraf is a inhibitor/pathway drug, odd as it sounds, I would consider this good news and not bad news considering what the drug is designed to do.

                                                        Why?  Liver mets are decreasing, lungs staying the same but something new in the intestine.  So to me, that means Zelboraf has shut down or is shutting down or holding two pathways, but that sneaky melanoma found a work around via a new pathway to the intestines…………..so Zel is two for three.

                                                        That ain't bad.

                                                        Just an opinion and I do wish you luck.

                                                        Charlie S

                                                        .

                                                        shellebrownies
                                                        Participant

                                                          Laurie,

                                                          Wishing you the very best of luck with your scans. Stay strong. You have lots of prayers coming your way!

                                                          Michelle

                                                          shellebrownies
                                                          Participant

                                                            Laurie,

                                                            Wishing you the very best of luck with your scans. Stay strong. You have lots of prayers coming your way!

                                                            Michelle

                                                            shellebrownies
                                                            Participant

                                                              Laurie,

                                                              Wishing you the very best of luck with your scans. Stay strong. You have lots of prayers coming your way!

                                                              Michelle

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