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Where can I find out about Braf negative?

Forums General Melanoma Community Where can I find out about Braf negative?

  • Post
    yoopergirl
    Participant

      I am stage lv with a braf negative but have never been told much about it. Right now am doing the Yervoy, 3rd treatment coming up on the 20th. Last year had interferon for the month and quit beacuse of all the side effects it gave me, Yervoy is giving me itching but that I can handle. If someone can steer me to good site about Braf I would appreciate it. My oncologist is 120 miles from me so it isn't like I could just pay him a visit but need to write down things to ask on the 20th. 

      I am stage lv with a braf negative but have never been told much about it. Right now am doing the Yervoy, 3rd treatment coming up on the 20th. Last year had interferon for the month and quit beacuse of all the side effects it gave me, Yervoy is giving me itching but that I can handle. If someone can steer me to good site about Braf I would appreciate it. My oncologist is 120 miles from me so it isn't like I could just pay him a visit but need to write down things to ask on the 20th. 

    Viewing 8 reply threads
    • Replies
        Janner
        Participant

          I don't have any websites for you, but I'm just trying to get the right picture.  Are you braf negative or positive?  In order to get the drug, you need to be braf V600E positive.  If you're not, I'm not really sure what questions you can really ask.  It only works on people with that particular braf defect.  If you don't have it, you'd be better off spending research time looking for other alternatives that are not specific to that defect..

          Best wishes on the Yervoy working for you!

          Janner 

          Janner
          Participant

            I don't have any websites for you, but I'm just trying to get the right picture.  Are you braf negative or positive?  In order to get the drug, you need to be braf V600E positive.  If you're not, I'm not really sure what questions you can really ask.  It only works on people with that particular braf defect.  If you don't have it, you'd be better off spending research time looking for other alternatives that are not specific to that defect..

            Best wishes on the Yervoy working for you!

            Janner 

            Janner
            Participant

              I don't have any websites for you, but I'm just trying to get the right picture.  Are you braf negative or positive?  In order to get the drug, you need to be braf V600E positive.  If you're not, I'm not really sure what questions you can really ask.  It only works on people with that particular braf defect.  If you don't have it, you'd be better off spending research time looking for other alternatives that are not specific to that defect..

              Best wishes on the Yervoy working for you!

              Janner 

              KatyWI
              Participant

                These people are working on treatment options for the BRAF-wt subset (eg, negative).

                http://www.standup2cancer.org/node/5026

                http://www.tgen.org/news/index.cfm?newsid=2016

                Trials haven't begun yet, though.

                  aldakota22
                  Participant

                    Sorry to say Braf  + is what is needed to have the newly approved targeted drug Zelboraf as a treatment option.Its is not given  to those Braf – for it is not effective.Keep the fight going We are all behind you.God bless.

                    yoopergirl
                    Participant

                      I am Braf negative, so now does Yervoy work or not??? I have so many more questions to ask my doctor.

                      Janner
                      Participant

                        Yervoy is not related to BRAF at all.  It doesn't target a specific molecule like BRAF.  Yervoy is available for any warrior regardless of mutations.  It may or may not work for you, but it won't be because you are BRAF negative.   Other treatment options (IL-2, chemos) are open to you as well.  Possibly other clinical trials, too.  Zelboraf and Veruafemib target specific BRAF + genes and won't be treatment options for someone who is BRAF negative. 

                        Write down all your questions and hand a copy of them to your doctor.  Then you can spend time listening to the answers instead of phrasing the next question.

                        Best wishes,

                        Janner

                        Janner
                        Participant

                          Yervoy is not related to BRAF at all.  It doesn't target a specific molecule like BRAF.  Yervoy is available for any warrior regardless of mutations.  It may or may not work for you, but it won't be because you are BRAF negative.   Other treatment options (IL-2, chemos) are open to you as well.  Possibly other clinical trials, too.  Zelboraf and Veruafemib target specific BRAF + genes and won't be treatment options for someone who is BRAF negative. 

                          Write down all your questions and hand a copy of them to your doctor.  Then you can spend time listening to the answers instead of phrasing the next question.

                          Best wishes,

                          Janner

                          Janner
                          Participant

                            Yervoy is not related to BRAF at all.  It doesn't target a specific molecule like BRAF.  Yervoy is available for any warrior regardless of mutations.  It may or may not work for you, but it won't be because you are BRAF negative.   Other treatment options (IL-2, chemos) are open to you as well.  Possibly other clinical trials, too.  Zelboraf and Veruafemib target specific BRAF + genes and won't be treatment options for someone who is BRAF negative. 

                            Write down all your questions and hand a copy of them to your doctor.  Then you can spend time listening to the answers instead of phrasing the next question.

                            Best wishes,

                            Janner

                            yoopergirl
                            Participant

                              Thanks Janner, I did talk to my nurse today and she also said make sure I write down some questions and ask the doctor.  They did tell me that IL-2 would not be an option because of my age and how hard it is on a person. So much to learn about this cancer it is sometimes overwhelming.

                               

                              yoopergirl

                              yoopergirl
                              Participant

                                Thanks Janner, I did talk to my nurse today and she also said make sure I write down some questions and ask the doctor.  They did tell me that IL-2 would not be an option because of my age and how hard it is on a person. So much to learn about this cancer it is sometimes overwhelming.

                                 

                                yoopergirl

                                JerryfromFauq
                                Participant

                                  i totally disagree with age alone being a disqualifying reason for not reciving IL-2.  ( hve been married for 49 years now and at age 64 1/2 went on IL-2 for 20 months with my Dr. G. Weiss at UV A who has been working with IL-2 since the early 1980's.  There are medical reasons that one should not take IL-2, age is not one.of them.  Two many Doctors do nor have enough experience with IL-2 side effects and are overly scared to recommend it's usage.  You need to be sure you go to an experienced IL-s Oncologist with a highly trained staff. 

                                     If you .are considering Clinical trials you should look at the anti-PD-1 trials.  These appear to have lower side effects than may treatments and so far have been amont the more succesful trials for melaoma.  So far all the anti-PD-1 trial I have seen require HLA-02.  I have see no reason for this requirement, hopefully somewhere it can be tried for none HLA-02 patients.

                                  JerryfromFauq
                                  Participant

                                    i totally disagree with age alone being a disqualifying reason for not reciving IL-2.  ( hve been married for 49 years now and at age 64 1/2 went on IL-2 for 20 months with my Dr. G. Weiss at UV A who has been working with IL-2 since the early 1980's.  There are medical reasons that one should not take IL-2, age is not one.of them.  Two many Doctors do nor have enough experience with IL-2 side effects and are overly scared to recommend it's usage.  You need to be sure you go to an experienced IL-s Oncologist with a highly trained staff. 

                                       If you .are considering Clinical trials you should look at the anti-PD-1 trials.  These appear to have lower side effects than may treatments and so far have been amont the more succesful trials for melaoma.  So far all the anti-PD-1 trial I have seen require HLA-02.  I have see no reason for this requirement, hopefully somewhere it can be tried for none HLA-02 patients.

                                    JerryfromFauq
                                    Participant

                                      i totally disagree with age alone being a disqualifying reason for not reciving IL-2.  ( hve been married for 49 years now and at age 64 1/2 went on IL-2 for 20 months with my Dr. G. Weiss at UV A who has been working with IL-2 since the early 1980's.  There are medical reasons that one should not take IL-2, age is not one.of them.  Two many Doctors do nor have enough experience with IL-2 side effects and are overly scared to recommend it's usage.  You need to be sure you go to an experienced IL-s Oncologist with a highly trained staff. 

                                         If you .are considering Clinical trials you should look at the anti-PD-1 trials.  These appear to have lower side effects than may treatments and so far have been amont the more succesful trials for melaoma.  So far all the anti-PD-1 trial I have seen require HLA-02.  I have see no reason for this requirement, hopefully somewhere it can be tried for none HLA-02 patients.

                                      yoopergirl
                                      Participant

                                        Thanks Janner, I did talk to my nurse today and she also said make sure I write down some questions and ask the doctor.  They did tell me that IL-2 would not be an option because of my age and how hard it is on a person. So much to learn about this cancer it is sometimes overwhelming.

                                         

                                        yoopergirl

                                        yoopergirl
                                        Participant

                                          I am Braf negative, so now does Yervoy work or not??? I have so many more questions to ask my doctor.

                                          yoopergirl
                                          Participant

                                            I am Braf negative, so now does Yervoy work or not??? I have so many more questions to ask my doctor.

                                            aldakota22
                                            Participant

                                              Sorry to say Braf  + is what is needed to have the newly approved targeted drug Zelboraf as a treatment option.Its is not given  to those Braf – for it is not effective.Keep the fight going We are all behind you.God bless.

                                              aldakota22
                                              Participant

                                                Sorry to say Braf  + is what is needed to have the newly approved targeted drug Zelboraf as a treatment option.Its is not given  to those Braf – for it is not effective.Keep the fight going We are all behind you.God bless.

                                              KatyWI
                                              Participant

                                                These people are working on treatment options for the BRAF-wt subset (eg, negative).

                                                http://www.standup2cancer.org/node/5026

                                                http://www.tgen.org/news/index.cfm?newsid=2016

                                                Trials haven't begun yet, though.

                                                KatyWI
                                                Participant

                                                  These people are working on treatment options for the BRAF-wt subset (eg, negative).

                                                  http://www.standup2cancer.org/node/5026

                                                  http://www.tgen.org/news/index.cfm?newsid=2016

                                                  Trials haven't begun yet, though.

                                                  premedy
                                                  Participant

                                                    You seem to be asking are there any Pathway inhibitors (the FDA approved one being Zelboraf, a braf inhibitor) for Braf negative people.  Some trial options would be a MEK inhibitor or the  PI3K inhibitor (there is a MEK PI3K combo trial out there. check out http://www.clinicaltrials.gov )  Also there is a Phase III trial for the drug E7080 which has shown some progress for both Braf positive and Braf negative people. according to Keith Flaherty (Braf  Guru, MD at Harvard).  There are arms for both braf positive and braf negative.

                                                    pat

                                                    premedy
                                                    Participant

                                                      You seem to be asking are there any Pathway inhibitors (the FDA approved one being Zelboraf, a braf inhibitor) for Braf negative people.  Some trial options would be a MEK inhibitor or the  PI3K inhibitor (there is a MEK PI3K combo trial out there. check out http://www.clinicaltrials.gov )  Also there is a Phase III trial for the drug E7080 which has shown some progress for both Braf positive and Braf negative people. according to Keith Flaherty (Braf  Guru, MD at Harvard).  There are arms for both braf positive and braf negative.

                                                      pat

                                                        yoopergirl
                                                        Participant

                                                          Pat , I am hoping that the Yervoy works for me but if it doesn't will surely ask about a clinical trial.  Thanks for the info.

                                                          yoopergirl
                                                          Participant

                                                            Pat , I am hoping that the Yervoy works for me but if it doesn't will surely ask about a clinical trial.  Thanks for the info.

                                                            yoopergirl
                                                            Participant

                                                              Pat , I am hoping that the Yervoy works for me but if it doesn't will surely ask about a clinical trial.  Thanks for the info.

                                                            premedy
                                                            Participant

                                                              You seem to be asking are there any Pathway inhibitors (the FDA approved one being Zelboraf, a braf inhibitor) for Braf negative people.  Some trial options would be a MEK inhibitor or the  PI3K inhibitor (there is a MEK PI3K combo trial out there. check out http://www.clinicaltrials.gov )  Also there is a Phase III trial for the drug E7080 which has shown some progress for both Braf positive and Braf negative people. according to Keith Flaherty (Braf  Guru, MD at Harvard).  There are arms for both braf positive and braf negative.

                                                              pat

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