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Stage 4 patients on Vemurafenib

Forums General Melanoma Community Stage 4 patients on Vemurafenib

  • Post
    starletwoman2007
    Participant

      Hi all 

      I have recently been diagnosed with stage 4 mm in my brain, stomach and liver and that surgery is not an option. I have the BRAF gene so have been started on Vem, but was told that it will only work for 6 to 12 months. Therefore, i was wondering whether others could tell me about their experience with vem and whether the time scales are realistic? 

      Thanks 

      Sally

    Viewing 11 reply threads
    • Replies
        Richard_K
        Participant

          Sally,

          For what it worth, March 3rd will mark 48 months for me on vemurafenib.

          Richard_K
          Participant

            Sally,

            For what it worth, March 3rd will mark 48 months for me on vemurafenib.

              starletwoman2007
              Participant

                Hi 

                 

                that is great news. Thank you for responding.

                starletwoman2007
                Participant

                  Hi 

                   

                  that is great news. Thank you for responding.

                  starletwoman2007
                  Participant

                    Hi 

                     

                    that is great news. Thank you for responding.

                  Richard_K
                  Participant

                    Sally,

                    For what it worth, March 3rd will mark 48 months for me on vemurafenib.

                    aldakota22
                    Participant

                      FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

                      aldakota22
                      Participant

                        FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

                        aldakota22
                        Participant

                          FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

                          POW
                          Participant

                            Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

                            For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

                            POW
                            Participant

                              Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

                              For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

                                POW
                                Participant

                                  By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

                                  What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

                                  Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

                                  POW
                                  Participant

                                    By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

                                    What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

                                    Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

                                    starletwoman2007
                                    Participant

                                      Hi 

                                      Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

                                      POW
                                      Participant

                                        The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

                                        POW
                                        Participant

                                          The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

                                          POW
                                          Participant

                                            The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

                                            JerryfromFauq
                                            Participant

                                              As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

                                              JerryfromFauq
                                              Participant

                                                As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

                                                JerryfromFauq
                                                Participant

                                                  As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

                                                  pigs_sty
                                                  Participant
                                                    Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
                                                    pigs_sty
                                                    Participant
                                                      Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
                                                      pigs_sty
                                                      Participant
                                                        Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
                                                        starletwoman2007
                                                        Participant

                                                          Hi 

                                                          Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

                                                          starletwoman2007
                                                          Participant

                                                            Hi 

                                                            Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

                                                            POW
                                                            Participant

                                                              By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

                                                              What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

                                                              Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

                                                            POW
                                                            Participant

                                                              Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

                                                              For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

                                                              Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

                                                              how long or how well it will go.  We just GO!  Best wishes to you.

                                                              Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

                                                              how long or how well it will go.  We just GO!  Best wishes to you.

                                                              Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

                                                              how long or how well it will go.  We just GO!  Best wishes to you.

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