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Braf or Braf/MEK combo trial/feedback needed

Forums General Melanoma Community Braf or Braf/MEK combo trial/feedback needed

  • Post
    killmel
    Participant

    Hi,

     

    I am new to the MPIP site & been reading everything. I am stage 3, unrescetable Braf positive. My doctor says I qualify for Braf or Braf/MEK combo trial.

    Would like to know for anyone what kind of side effectss and timeframe for a response (tumor shrinkage) have you experienced.

    Also, if you get "remission"/no more tumors do you still have to kep taking the drugs forever???

    I am scared and hope to learn more from you so that I can go into the trial with realistic expectations.

    Hi,

     

    I am new to the MPIP site & been reading everything. I am stage 3, unrescetable Braf positive. My doctor says I qualify for Braf or Braf/MEK combo trial.

    Would like to know for anyone what kind of side effectss and timeframe for a response (tumor shrinkage) have you experienced.

    Also, if you get "remission"/no more tumors do you still have to kep taking the drugs forever???

    I am scared and hope to learn more from you so that I can go into the trial with realistic expectations.

    Any feedback on your experience would be greatly appreciated.

    God Bless you all

    Lena

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  • Replies
      EricNJill
      Participant

      My husband just started a BRAF/MEK combination trial yesterday.  We were told that they are commonly seeing diarreha, skin rash and fevers.  There are of course many others listed but those seem to be the most common.  I've heard that some people notice a difference in their tumors within days.  I guess it would depend on where your tumors are and how noticable they are.  Eric has over hundred tumors in and on his right leg so we hope to atleast notice some shinkage in a couple of weeks.

      Good Luck to you!

      JillNEric

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      EricNJill
      Participant

      My husband just started a BRAF/MEK combination trial yesterday.  We were told that they are commonly seeing diarreha, skin rash and fevers.  There are of course many others listed but those seem to be the most common.  I've heard that some people notice a difference in their tumors within days.  I guess it would depend on where your tumors are and how noticable they are.  Eric has over hundred tumors in and on his right leg so we hope to atleast notice some shinkage in a couple of weeks.

      Good Luck to you!

      JillNEric

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      Hi Lena,

      I have just updated my profile(click on my name and it will take you there)  which includes the side effects that I have experienced and response times.

      This inhibitor drug is one that you take for the duration even when the tumors are gone, as is my understanding.

      However, we are on the cusp of a new era in melanoma.  With time they will find a combination of drugs that will blow those nasty little buggers out of the water! 

      Take care, many blessings to you and your husband.

      Shelly in Switzerland

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      Hi Lena,

      I have just updated my profile(click on my name and it will take you there)  which includes the side effects that I have experienced and response times.

      This inhibitor drug is one that you take for the duration even when the tumors are gone, as is my understanding.

      However, we are on the cusp of a new era in melanoma.  With time they will find a combination of drugs that will blow those nasty little buggers out of the water! 

      Take care, many blessings to you and your husband.

      Shelly in Switzerland

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