Where can I find out about Braf negative?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Where can I find out about Braf negative?

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

  • Post
    • February 5, 2012 at 5:20 pm
    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
      • February 5, 2012 at 7:51 pm
      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 

      • February 5, 2012 at 7:51 pm
      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 

      • February 5, 2012 at 7:51 pm
      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 

      • February 6, 2012 at 12:38 am
      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.

      • February 6, 2012 at 12:38 am
      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.

        • February 6, 2012 at 1:22 am
        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.

        • February 6, 2012 at 1:22 am
        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.

        • February 6, 2012 at 1:38 am
        yoopergirl
        Participant

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

        • February 6, 2012 at 1:38 am
        yoopergirl
        Participant

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

        • February 6, 2012 at 2:16 am
        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

        • February 6, 2012 at 2:16 am
        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

        • February 7, 2012 at 1:09 am
        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

        • February 7, 2012 at 11:47 pm
        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.

        • February 7, 2012 at 11:47 pm
        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.

        • February 7, 2012 at 11:47 pm
        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.

        • February 7, 2012 at 1:09 am
        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

        • February 7, 2012 at 1:09 am
        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

        • February 6, 2012 at 2:16 am
        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

        • February 6, 2012 at 1:38 am
        yoopergirl
        Participant

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

        • February 6, 2012 at 1:22 am
        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.

      • February 6, 2012 at 12:38 am
      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.

      • February 6, 2012 at 11:11 pm
      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

        • February 7, 2012 at 1:11 am
        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.

        • February 7, 2012 at 1:11 am
        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.

        • February 7, 2012 at 1:11 am
        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.

      • February 6, 2012 at 11:11 pm
      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

      • February 6, 2012 at 11:11 pm
      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

Viewing 8 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.