No Braf Mutation – good or bad?
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No Braf Mutation – good or bad?

› Forums › General Melanoma Community › No Braf Mutation – good or bad?

  • Post
    • July 30, 2012 at 7:09 pm
    Maggie23
    Participant

    My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

    My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

Viewing 8 reply threads
  • Replies
      • July 30, 2012 at 8:48 pm
      MichaelFL
      Participant

      Well, it's both. It's good to be positive for the BRAF V600E mutation as it makes a few specific drugs usable for treatment, but bad in that if even there is a response, it is temporary as the melanoma usually finds a way around the mutation and starts growing again after a period of time.

      Where is she being seen? A little history would be helpful.

      Has IL-2 or adoptive cell therapy been mentioned? Perhaps a clinical trial? Anti-PD-1?

      • July 30, 2012 at 8:48 pm
      MichaelFL
      Participant

      Well, it's both. It's good to be positive for the BRAF V600E mutation as it makes a few specific drugs usable for treatment, but bad in that if even there is a response, it is temporary as the melanoma usually finds a way around the mutation and starts growing again after a period of time.

      Where is she being seen? A little history would be helpful.

      Has IL-2 or adoptive cell therapy been mentioned? Perhaps a clinical trial? Anti-PD-1?

        • July 30, 2012 at 11:13 pm
        Maggie23
        Participant

        Thank you for the response.  She is being seen at Dana Farber in Boston.  She is starting Ippi treatments this week.  Clinical trials were mentioned but none of them were open and would not be open until September.  The doctor felt that this would be too long to wait without a guarantee that she would be accepted.  She was eligible for a vemurafenib  and IPPI clincial trial where they would be administered at the same time but obviously won't be doing that as she is not BRAF positive. 

        • July 30, 2012 at 11:13 pm
        Maggie23
        Participant

        Thank you for the response.  She is being seen at Dana Farber in Boston.  She is starting Ippi treatments this week.  Clinical trials were mentioned but none of them were open and would not be open until September.  The doctor felt that this would be too long to wait without a guarantee that she would be accepted.  She was eligible for a vemurafenib  and IPPI clincial trial where they would be administered at the same time but obviously won't be doing that as she is not BRAF positive. 

        • July 30, 2012 at 11:13 pm
        Maggie23
        Participant

        Thank you for the response.  She is being seen at Dana Farber in Boston.  She is starting Ippi treatments this week.  Clinical trials were mentioned but none of them were open and would not be open until September.  The doctor felt that this would be too long to wait without a guarantee that she would be accepted.  She was eligible for a vemurafenib  and IPPI clincial trial where they would be administered at the same time but obviously won't be doing that as she is not BRAF positive. 

      • July 30, 2012 at 8:48 pm
      MichaelFL
      Participant

      Well, it's both. It's good to be positive for the BRAF V600E mutation as it makes a few specific drugs usable for treatment, but bad in that if even there is a response, it is temporary as the melanoma usually finds a way around the mutation and starts growing again after a period of time.

      Where is she being seen? A little history would be helpful.

      Has IL-2 or adoptive cell therapy been mentioned? Perhaps a clinical trial? Anti-PD-1?

      • July 31, 2012 at 1:04 am
      gabsound
      Participant
      Being ” wild type ” or negative for BRAF makes you ineligible for BRAF drugs, but still leaves Yervoy aka IPPI and anti PD1 trials.

      Please look for recent posts ( in last week or so) fro Linny and Awillet? They posted links to some good articles with a lot of good info.

      Julie in Las Vegas

      • July 31, 2012 at 1:04 am
      gabsound
      Participant
      Being ” wild type ” or negative for BRAF makes you ineligible for BRAF drugs, but still leaves Yervoy aka IPPI and anti PD1 trials.

      Please look for recent posts ( in last week or so) fro Linny and Awillet? They posted links to some good articles with a lot of good info.

      Julie in Las Vegas

        • July 31, 2012 at 2:58 am
        Maggie23
        Participant

        Thank Julie,  Those were interesting articles and I will print them out for my Mom.  We are new to this and trying to learn as much as we can, as fast as we can!  The anti PD1 trial would not be open until September and the doctor advised us that it would be too long to wait.  I hope that Ippi is a good choice as it seems to be the only one available.  Thank you for your help!

        • July 31, 2012 at 2:58 am
        Maggie23
        Participant

        Thank Julie,  Those were interesting articles and I will print them out for my Mom.  We are new to this and trying to learn as much as we can, as fast as we can!  The anti PD1 trial would not be open until September and the doctor advised us that it would be too long to wait.  I hope that Ippi is a good choice as it seems to be the only one available.  Thank you for your help!

        • July 31, 2012 at 2:58 am
        Maggie23
        Participant

        Thank Julie,  Those were interesting articles and I will print them out for my Mom.  We are new to this and trying to learn as much as we can, as fast as we can!  The anti PD1 trial would not be open until September and the doctor advised us that it would be too long to wait.  I hope that Ippi is a good choice as it seems to be the only one available.  Thank you for your help!

      • July 31, 2012 at 1:04 am
      gabsound
      Participant
      Being ” wild type ” or negative for BRAF makes you ineligible for BRAF drugs, but still leaves Yervoy aka IPPI and anti PD1 trials.

      Please look for recent posts ( in last week or so) fro Linny and Awillet? They posted links to some good articles with a lot of good info.

      Julie in Las Vegas

      • July 31, 2012 at 10:08 am
      LynnLuc
      Participant

      Just my own 2 cents…and from what I have read I believe those postive with the mutation seem to have a slightly more aggressive melanoma.Not too many trials address the Braf mutation. I am not certain.  I am on Anti PD-1 trial and I have HLA 201 . They also believe that anti pd-1 will work if you have PDL1…and from what I have read and have been told they don'tt hink it will work if you don't have PDL1. I am stage 4 and have been NED for 2 years and 4 months. I will continue in this trial for a total of 30 months, getting infusions of anti PD-1 only once every 3 months. Initial I received it along with 6 peptide injections every other week for 24 weeks.  I am in week 96 of the trial now. Hoping to remain NED!

      • July 31, 2012 at 10:08 am
      LynnLuc
      Participant

      Just my own 2 cents…and from what I have read I believe those postive with the mutation seem to have a slightly more aggressive melanoma.Not too many trials address the Braf mutation. I am not certain.  I am on Anti PD-1 trial and I have HLA 201 . They also believe that anti pd-1 will work if you have PDL1…and from what I have read and have been told they don'tt hink it will work if you don't have PDL1. I am stage 4 and have been NED for 2 years and 4 months. I will continue in this trial for a total of 30 months, getting infusions of anti PD-1 only once every 3 months. Initial I received it along with 6 peptide injections every other week for 24 weeks.  I am in week 96 of the trial now. Hoping to remain NED!

      • July 31, 2012 at 10:08 am
      LynnLuc
      Participant

      Just my own 2 cents…and from what I have read I believe those postive with the mutation seem to have a slightly more aggressive melanoma.Not too many trials address the Braf mutation. I am not certain.  I am on Anti PD-1 trial and I have HLA 201 . They also believe that anti pd-1 will work if you have PDL1…and from what I have read and have been told they don'tt hink it will work if you don't have PDL1. I am stage 4 and have been NED for 2 years and 4 months. I will continue in this trial for a total of 30 months, getting infusions of anti PD-1 only once every 3 months. Initial I received it along with 6 peptide injections every other week for 24 weeks.  I am in week 96 of the trial now. Hoping to remain NED!

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