The Wild Ones – BRAF negative
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The Wild Ones – BRAF negative

› Forums › General Melanoma Community › The Wild Ones – BRAF negative

  • Post
    • June 29, 2011 at 1:15 pm
    Lisa13
    Participant

    There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs – they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

    There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs – they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

    I asked my surgical oncologist to test my tumour for all mutations so that I could be prepared going forward.  I'm happy I signed my tumour over to the lab for TIL testing because that could be an option in another 6 months.

    I'm so thankful for all these breakthoroughs. I do believe that survival stats will double within the next 5 years.

    Best of luck!

    Lisa – Stage 4

Viewing 11 reply threads
  • Replies
      • June 29, 2011 at 2:20 pm
      FormerCaregiver
      Participant

      Although there is a lot of excitement about the new drugs being developed such as BRAF
      inhibitors, there is much work left to be done. Here is short article called "Alphabet
      Soup" and it is about all this: http://www.melanoma.org/blog/category/treatment (2nd from
      top of page).

      Perhaps the most important questions that researchers face are why do the current drugs
      stop working in many cases, and how does melanoma outsmart most treatments?

      It is really good that you have signed your tumour over to the lab for TIL testing. I feel
      that TIL therapy has a lot of potential for giving one the chance of achieving a durable
      remission.

      Best wishes

      Frank from Australia

      • June 29, 2011 at 2:20 pm
      FormerCaregiver
      Participant

      Although there is a lot of excitement about the new drugs being developed such as BRAF
      inhibitors, there is much work left to be done. Here is short article called "Alphabet
      Soup" and it is about all this: http://www.melanoma.org/blog/category/treatment (2nd from
      top of page).

      Perhaps the most important questions that researchers face are why do the current drugs
      stop working in many cases, and how does melanoma outsmart most treatments?

      It is really good that you have signed your tumour over to the lab for TIL testing. I feel
      that TIL therapy has a lot of potential for giving one the chance of achieving a durable
      remission.

      Best wishes

      Frank from Australia

      • June 29, 2011 at 2:31 pm
      MichaelFL
      Participant

      Are you saying you have the BRAF wild type mutation?

      Wild-type is the term used for the typical form of a gene, or characteristic as it was first observed in nature or in the wild. it means that the gene is “normal; it has no detectable mutation.

      Other than Sorafenib, (Nexavar) which has failed in phase three trials, (as it was found that sorafenib does not effectively inhibit BRAF), I do not believe there are currently any studies being done concerning wild type.

      Per your profile, you do have other options such as Yervoy and IL-2. As frank said, TIL is a good option as well.

      Good luck,

      Michael

        • June 29, 2011 at 2:33 pm
        MichaelFL
        Participant

        Should say: (as it was found that sorafenib does not effectively inhibit BRAF, or BRAF wild type)

        • June 29, 2011 at 2:33 pm
        MichaelFL
        Participant

        Should say: (as it was found that sorafenib does not effectively inhibit BRAF, or BRAF wild type)

      • June 29, 2011 at 2:31 pm
      MichaelFL
      Participant

      Are you saying you have the BRAF wild type mutation?

      Wild-type is the term used for the typical form of a gene, or characteristic as it was first observed in nature or in the wild. it means that the gene is “normal; it has no detectable mutation.

      Other than Sorafenib, (Nexavar) which has failed in phase three trials, (as it was found that sorafenib does not effectively inhibit BRAF), I do not believe there are currently any studies being done concerning wild type.

      Per your profile, you do have other options such as Yervoy and IL-2. As frank said, TIL is a good option as well.

      Good luck,

      Michael

      • June 29, 2011 at 2:46 pm
      lhaley
      Participant

      Lisa,

      Have you had your HLA factor tested yet? That's a blood test. I know that I've not been eligible for many trials because I am HLA0210negative.  At least in the states this will give you more options.

      Linda

      Stage IV since 06  currently doing radiation

      • June 29, 2011 at 2:46 pm
      lhaley
      Participant

      Lisa,

      Have you had your HLA factor tested yet? That's a blood test. I know that I've not been eligible for many trials because I am HLA0210negative.  At least in the states this will give you more options.

      Linda

      Stage IV since 06  currently doing radiation

      • June 29, 2011 at 4:56 pm
      kylez
      Participant
      Besides TIL another one that looks interesting for us wild types is E7080. Check out this presentation from ASCO 2011.

      http://abstract.asco.org/AbstView_102_78644.html

      E7080 showed superior anti-tumor activity against BRAFwt melanoma, in which the type of tumor vessels was sensitive to angiogenesis inhibition by E7080 and a subgroup of which were dependent on FGFR3 signaling.

      • June 29, 2011 at 4:56 pm
      kylez
      Participant
      Besides TIL another one that looks interesting for us wild types is E7080. Check out this presentation from ASCO 2011.

      http://abstract.asco.org/AbstView_102_78644.html

      E7080 showed superior anti-tumor activity against BRAFwt melanoma, in which the type of tumor vessels was sensitive to angiogenesis inhibition by E7080 and a subgroup of which were dependent on FGFR3 signaling.

      • June 29, 2011 at 4:58 pm
      kylez
      Participant
      MDX-1106 is another pro using one for us wild types too.
        • June 29, 2011 at 5:00 pm
        kylez
        Participant
        Pro using = promising (auto correct mishap)
        • June 29, 2011 at 5:00 pm
        kylez
        Participant
        Pro using = promising (auto correct mishap)
        • June 29, 2011 at 7:15 pm
        MichaelFL
        Participant

        I may be a day or two behind the times on this, but could you point out where you found this information? I could find no current clinical trails where MDX-1106 is currently being used for wild type BRAF.

        I am aware of a number of preclinical as well as several earlier phase 1 studies that have demonstrated that BRAF inhibitors activate MEK and MAP kinases in melanoma cell lines with wild-type BRAF, including cell lines with mutant NRAS. These studies suggest at least one potential mechanism of resistance is through continued activation of the RAS-RAF-MEK-ERK signaling pathway. Several ongoing clinical trials using the combination of BRAF and MEK targeted agents will be able to test this hypothesis.

        Michael

        • July 1, 2011 at 3:26 am
        kylez
        Participant

        The following study is active and the criteria make no mention that I can see of BRAF mutation status: http://clinicaltrials.gov/ct2/show/NCT00730639 They just started up a new cohort, I know because someone I know just started on the new cohort in Boston at Beth Israel Deaconess.

        My doc here in SF said he thinks ~150 humans have taken MDX-1106 so far.

        Here's another one that's a combo with IPI, that I know a lot less about. But it doesn't mention BRAF either that I can see: http://clinicaltrials.gov/ct2/show/NCT01024231

        • July 1, 2011 at 3:26 am
        kylez
        Participant

        The following study is active and the criteria make no mention that I can see of BRAF mutation status: http://clinicaltrials.gov/ct2/show/NCT00730639 They just started up a new cohort, I know because someone I know just started on the new cohort in Boston at Beth Israel Deaconess.

        My doc here in SF said he thinks ~150 humans have taken MDX-1106 so far.

        Here's another one that's a combo with IPI, that I know a lot less about. But it doesn't mention BRAF either that I can see: http://clinicaltrials.gov/ct2/show/NCT01024231

        • June 29, 2011 at 7:15 pm
        MichaelFL
        Participant

        I may be a day or two behind the times on this, but could you point out where you found this information? I could find no current clinical trails where MDX-1106 is currently being used for wild type BRAF.

        I am aware of a number of preclinical as well as several earlier phase 1 studies that have demonstrated that BRAF inhibitors activate MEK and MAP kinases in melanoma cell lines with wild-type BRAF, including cell lines with mutant NRAS. These studies suggest at least one potential mechanism of resistance is through continued activation of the RAS-RAF-MEK-ERK signaling pathway. Several ongoing clinical trials using the combination of BRAF and MEK targeted agents will be able to test this hypothesis.

        Michael

        • June 30, 2011 at 12:42 am
        LynnLuc
        Participant

        Yep..  I have the HLA type and I like the MDX 1106   so far so good!!

        • June 30, 2011 at 12:42 am
        LynnLuc
        Participant

        Yep..  I have the HLA type and I like the MDX 1106   so far so good!!

        • June 30, 2011 at 12:44 am
        LynnLuc
        Participant

        PS  timing is everything too! If I did Ipi ( Yervoy) first, I couldn't have done the Anti PD-1 ( MDX 1106) but doing MDX 1106 first I can still do Ipi if I need to…

        • June 30, 2011 at 12:44 am
        LynnLuc
        Participant

        PS  timing is everything too! If I did Ipi ( Yervoy) first, I couldn't have done the Anti PD-1 ( MDX 1106) but doing MDX 1106 first I can still do Ipi if I need to…

        • July 1, 2011 at 3:28 am
        kylez
        Participant

        Yep… I just started IPI. No MDX-1106 for me, at least with any current MDX-1106 trial.

        • July 1, 2011 at 3:28 am
        kylez
        Participant

        Yep… I just started IPI. No MDX-1106 for me, at least with any current MDX-1106 trial.

      • June 29, 2011 at 4:58 pm
      kylez
      Participant
      MDX-1106 is another pro using one for us wild types too.
      • June 30, 2011 at 4:04 am
      boot2aboot
      Participant
      Michael,
      Please let us know more about the braf/mek combo trials…
      boots
      • June 30, 2011 at 4:04 am
      boot2aboot
      Participant
      Michael,
      Please let us know more about the braf/mek combo trials…
      boots
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