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but what happens?

Forums General Melanoma Community but what happens?

  • Post
    manu000
    Participant

    Hello guys,

    Today we received a shocking news.
    My girlfriend was not compatible with ipilimumab and decided to change therapy, and since it has the BRAF mutation to proceed with this therapy.
    Today we went to the hospital to make the first pad and we were informed that the mutation is not consistent with that of BRAF, we have explained that the mutation but not the same as that required for the drug. In your opinion, could have denied the drug for BRAF lesions in the head?

    Will now be subjected to strong chemotherapy that uses 4 different drugs.

    I do not know what to think, has just finished the sessions of radiotherapy for head injuries and in these 2 weeks when she does not take chemotherapy feel better.

    You have no idea what will have to take?
    They will give us more information this week

Viewing 5 reply threads
  • Replies
      washoegal
      Participant

      Sorry she was denied Ippi, I noticed you are from Italy.  Is the drug still in trial phase over there?  If it is the head injury could be the reason for denial.

      It is possible that she was denied the BRAF drug because of the head injury if it is still in trial phase.  Another, more likely, possibility is that she did not have the correct BRAF mutation.  There are different varieties within that particular mutation and each drug is very specific.

      The combo chemo has been effective for some so don't write it off.  And unlike the BRAF therapy, probably has a more lasting effect if it works. 

       

      Gook Luck,

      Mary

      Stage 3

      washoegal
      Participant

      Sorry she was denied Ippi, I noticed you are from Italy.  Is the drug still in trial phase over there?  If it is the head injury could be the reason for denial.

      It is possible that she was denied the BRAF drug because of the head injury if it is still in trial phase.  Another, more likely, possibility is that she did not have the correct BRAF mutation.  There are different varieties within that particular mutation and each drug is very specific.

      The combo chemo has been effective for some so don't write it off.  And unlike the BRAF therapy, probably has a more lasting effect if it works. 

       

      Gook Luck,

      Mary

      Stage 3

      CKasper
      Participant

      I left this board in 2007.  I'm sorry for your setbacks, it is always so frustrating.

      Keep your mind strong, pray and fight. 

      I have been here with this disease since 1984…..fight fight fight.

      Prayers for you and positive vibes and a positive attitude.

      Peace be with you,

      C

      CKasper
      Participant

      I left this board in 2007.  I'm sorry for your setbacks, it is always so frustrating.

      Keep your mind strong, pray and fight. 

      I have been here with this disease since 1984…..fight fight fight.

      Prayers for you and positive vibes and a positive attitude.

      Peace be with you,

      C

      JerryfromFauq
      Participant

      The Roche BRAF drug was tested against and is only approved for the BRAF V600E mutation.  The GSK BRAF drug is being tested against more than one BRAF mutation.  I the GSK drug available in any trials in Europe?  If so it might be what you need.  Also are there any MEK trials in available to you?

      JerryfromFauq
      Participant

      The Roche BRAF drug was tested against and is only approved for the BRAF V600E mutation.  The GSK BRAF drug is being tested against more than one BRAF mutation.  I the GSK drug available in any trials in Europe?  If so it might be what you need.  Also are there any MEK trials in available to you?

        manu000
        Participant
        Thanks, I'm newly in this forum but I read the few lines that give me the charge to go forward with more energy. thanks again

        washoegal ipilimumab was granted for a trial along with fotemustine

        Jerry what do you mean there is no MEK trial ? What is MEK ?

        thanks

        manu000
        Participant
        Thanks, I'm newly in this forum but I read the few lines that give me the charge to go forward with more energy. thanks again

        washoegal ipilimumab was granted for a trial along with fotemustine

        Jerry what do you mean there is no MEK trial ? What is MEK ?

        thanks

        Tim–MRF
        Guest

        Jerry will probably respond, but I will jump in a bit.

        BRAF is a mutation that affects a "pathway" in cells.  This pathway is like a series of switches that sends a signal from the cell wall to the cell nucleus, telling it to grow and divide.  With the BRAF mutation, the switch is always "on" even though it shouldn't be.

        BRAF is coded by a gene called "braf" and that gene can have mutations at a number of different locations along the gene structure.  By far the most common location is a place called V600e.  There are other V600 mutations, but they are rare. 

        The Roche BRAF inhibitor targets that V600e mutation.  The GSK (Glaxo SmithKline)  BRAF inhibitor, which is still in clinical trials, is less specific and can be effective for other BRAF mutations.

        MEK is another step along the pathway, further down the line from BRAF.  Both Roche and GSK have MEK inhibitors in trials, and both are testing combinations of their BRAF inhibitor along with their MEK inhibitor.

        You don't have to have the BRAF mutation to be on the MEK trial, so MEK is an option even if there is no BRAF mutation.

        Hope this helps.

         

        Tim–MRF

        Tim–MRF
        Guest

        Jerry will probably respond, but I will jump in a bit.

        BRAF is a mutation that affects a "pathway" in cells.  This pathway is like a series of switches that sends a signal from the cell wall to the cell nucleus, telling it to grow and divide.  With the BRAF mutation, the switch is always "on" even though it shouldn't be.

        BRAF is coded by a gene called "braf" and that gene can have mutations at a number of different locations along the gene structure.  By far the most common location is a place called V600e.  There are other V600 mutations, but they are rare. 

        The Roche BRAF inhibitor targets that V600e mutation.  The GSK (Glaxo SmithKline)  BRAF inhibitor, which is still in clinical trials, is less specific and can be effective for other BRAF mutations.

        MEK is another step along the pathway, further down the line from BRAF.  Both Roche and GSK have MEK inhibitors in trials, and both are testing combinations of their BRAF inhibitor along with their MEK inhibitor.

        You don't have to have the BRAF mutation to be on the MEK trial, so MEK is an option even if there is no BRAF mutation.

        Hope this helps.

         

        Tim–MRF

        JerryfromFauq
        Participant

        I did not mean to imply that there are no MEK trials.  I do not know if there are any available to you.  Someone said that you are in Italy, I do not keep up with where trials are in other places in the world.  I do not have  time to do all the research I would like, so hope you can find the additional infomation for your area.  There have been trials in the USA of both drugs seperately and it has been learned that because melanoma can activate other locations in the signaling path that often more than one place in the signaling path needs to be attacked to stand a better hance of either stopping or further delayiing this disease.  There are trials starting here that will attack both points to see if additional benefit is gained.

           Tim did a good job of explaining how the pathway flows and the broad difference in the GSK and Roche approach.  This is an area that the news media has not made clear in the media releases on the drugs.  This lack of clarity is a problem to many that need  information. 

           Please research both the GSK BRAF drug trial locations, the GSK MEK trial locations and the loations of any joint trials between their two drugs.  you should also see if she can get in any of the Roche MEK trials.

        JerryfromFauq
        Participant

        I did not mean to imply that there are no MEK trials.  I do not know if there are any available to you.  Someone said that you are in Italy, I do not keep up with where trials are in other places in the world.  I do not have  time to do all the research I would like, so hope you can find the additional infomation for your area.  There have been trials in the USA of both drugs seperately and it has been learned that because melanoma can activate other locations in the signaling path that often more than one place in the signaling path needs to be attacked to stand a better hance of either stopping or further delayiing this disease.  There are trials starting here that will attack both points to see if additional benefit is gained.

           Tim did a good job of explaining how the pathway flows and the broad difference in the GSK and Roche approach.  This is an area that the news media has not made clear in the media releases on the drugs.  This lack of clarity is a problem to many that need  information. 

           Please research both the GSK BRAF drug trial locations, the GSK MEK trial locations and the loations of any joint trials between their two drugs.  you should also see if she can get in any of the Roche MEK trials.

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