BRAF question
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BRAF question

› Forums › General Melanoma Community › BRAF question

  • Post
    • October 14, 2016 at 2:42 pm
    stotesbery
    Participant

    Hi,

    i have had my BRAF status tested twice since January 2016 and it has come back negative both times.  One of my Oncologists recently ordered genomic testing when I progressed from stage lllC to stage IV (had a subcutaneous nodule removed and found to be melanoma).  The testing results (the subcutaneous nodule was the tumor that was tested) came back with  a BRAF V600D mutation but for only 20% of the cells.  Has anyone ever heard of this mutation or had a a similar type of result with only some of the cells being positive?  Any info would be appreciated!  I am currently on Opdivo and have had my third infusion but I swear the tumor (that I still have on my right butt muscle) is growing as it feels inflamed and painful which it did not before.  I just feel like nothing is working but I am so determined to beat this.  I just keep searching for the next thing to try.  I have already progressed while taking ipi at the 3mg dose and if Opdivo does not work either does it make any sense to try the combo?  I guess that is a lot of questions but trying to think of my options.  Thank you!

Viewing 5 reply threads
  • Replies
      • October 14, 2016 at 3:33 pm
      debwray
      Participant

      Hi

      Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

      This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

      The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

      Also you could have a sniff around clinical trials.gov.

      Go to advanced search

      Put tick in open trials

      Put tick in 18_65

      Condition melanoma

      Then put in your state/country

      And see what turns up

      If you know what trials are out there . easier to make enquiries.

      Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

      Best wishes

      Deb

       

        • October 14, 2016 at 10:16 pm
        stotesbery
        Participant

        Deb,

        Thanks for the info.  I want to be as prepared as I can before I see my Oncologist.  I will definitely take all those options into consideration.

        Thanks again – Christal 

        • October 14, 2016 at 10:16 pm
        stotesbery
        Participant

        Deb,

        Thanks for the info.  I want to be as prepared as I can before I see my Oncologist.  I will definitely take all those options into consideration.

        Thanks again – Christal 

        • October 14, 2016 at 10:16 pm
        stotesbery
        Participant

        Deb,

        Thanks for the info.  I want to be as prepared as I can before I see my Oncologist.  I will definitely take all those options into consideration.

        Thanks again – Christal 

      • October 14, 2016 at 3:33 pm
      debwray
      Participant

      Hi

      Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

      This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

      The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

      Also you could have a sniff around clinical trials.gov.

      Go to advanced search

      Put tick in open trials

      Put tick in 18_65

      Condition melanoma

      Then put in your state/country

      And see what turns up

      If you know what trials are out there . easier to make enquiries.

      Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

      Best wishes

      Deb

       

      • October 14, 2016 at 3:33 pm
      debwray
      Participant

      Hi

      Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

      This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

      The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

      Also you could have a sniff around clinical trials.gov.

      Go to advanced search

      Put tick in open trials

      Put tick in 18_65

      Condition melanoma

      Then put in your state/country

      And see what turns up

      If you know what trials are out there . easier to make enquiries.

      Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

      Best wishes

      Deb

       

      • October 14, 2016 at 3:53 pm
      Bubbles
      Participant

      Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

      1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

      2.  There is more work being done on treatments for less common melanoma mutations.

      3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

      Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

      I wish you my best.  Celeste

        • October 14, 2016 at 10:12 pm
        stotesbery
        Participant

        Celeste,

        Thanks for the great in your reply and on your blog.  I apppreciate your response.  I had no idea there were other BRAF mutations so was surprised to this as a result from my testing.  I was also surprised to see that only 20% of the cells tested postive for BRAF.  There were no other mutations found including no NRAS mutation.

        Thanks again – Christal 

        • October 14, 2016 at 10:12 pm
        stotesbery
        Participant

        Celeste,

        Thanks for the great in your reply and on your blog.  I apppreciate your response.  I had no idea there were other BRAF mutations so was surprised to this as a result from my testing.  I was also surprised to see that only 20% of the cells tested postive for BRAF.  There were no other mutations found including no NRAS mutation.

        Thanks again – Christal 

        • October 14, 2016 at 10:13 pm
        stotesbery
        Participant

        That should say "great info" 

        • October 14, 2016 at 10:13 pm
        stotesbery
        Participant

        That should say "great info" 

        • October 14, 2016 at 10:13 pm
        stotesbery
        Participant

        That should say "great info" 

        • October 14, 2016 at 10:12 pm
        stotesbery
        Participant

        Celeste,

        Thanks for the great in your reply and on your blog.  I apppreciate your response.  I had no idea there were other BRAF mutations so was surprised to this as a result from my testing.  I was also surprised to see that only 20% of the cells tested postive for BRAF.  There were no other mutations found including no NRAS mutation.

        Thanks again – Christal 

      • October 14, 2016 at 3:53 pm
      Bubbles
      Participant

      Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

      1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

      2.  There is more work being done on treatments for less common melanoma mutations.

      3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

      Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

      I wish you my best.  Celeste

      • October 14, 2016 at 3:53 pm
      Bubbles
      Participant

      Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

      1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

      2.  There is more work being done on treatments for less common melanoma mutations.

      3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

      Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

      I wish you my best.  Celeste

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