Braf mutation or mutant

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Hi I have had my latest information through and I can't have surgery but have been accepted for Sabr, I am also Braf mutant or mutation I can't remember what my nurse said when she called me, I was also in a shop so didn't ask any questions, What does Braf mutation mean? Does it change my treatment options? I was offered immunotherapy before these latest test results came back. I am stage 4.  Thank you.

  • Hello,

    BRAF gene mutation means there's other drugs which may also be an option for you.

    I had the same BRAF mutation and was offered trametinib and dabrafenib because of it.

    An excerpt from the Macmillan page on it:

    If you have melanoma that has spread to the lymph nodes, your doctor may test the melanoma cells for any change to the genes. Changes to the genes in our cells are called mutations. A mutation in the BRAF gene can cause the cells to make a protein. The protein encourages melanoma cells to divide and grow.

    About half of people with melanoma have the BRAF gene mutation. If you have a BRAF gene mutation, your doctor may offer you a combination of targeted therapies. This treatment can help shrink or slow the growth of the melanoma. Targeted therapies are not helpful for people who do not have the BRAF mutation.

    All the best

  • FormerMember
    FormerMember

    Hi H, I’m another who has the BRAF mutation.

    My Team put me on Dabrafenib tablets as my first treatment, this was in 2015 before Tramatenib was available outside of a trial. 8 months later I was moved onto Pembrolizumab immunotherapy treatment by iv, which I have now stopped.  I’m currently receiving a different tablet that targets the BRAF gene together with a second tablet targeting a different one MEK,  Encorafanib and Binimetinib which do the same job as Dabrafenib and Trametinib but have a different manufacturer and can be taken with or without food. 

    Good luck with your Sabr and which ever treatment you choose with your oncologist. They will take your chronic pain into account when advising you and I don’t think it matters which drug you have first. I try and ask them which one they recommend and why. Let us know how you get on.

    My nurses are very good and you can ring them and ask any questions that you didn’t get to ask them at the time, they are well used to people freezing up with emotion and later getting their logical head back on. I just avoid clinic days and Multidisciplinary Team meeting days as they are super busy. The Macmillan information and support pages are full of stuff to help us understand our diagnosis and treatment as well as cancer research and Melanoma Focus and loads of us here to give our personal experiences to help.

  • Thank you so much for the reply, such great information too Heart️. So sorry you have been through it., I never stopped to consider my previous or currant medical issues great point. I am not one to Google but have tried to find information about Braf and treatment but it mainly seems to be medical terms (not what I am looking for) then it dawned on me to ask in here. I may give me nurse a call Monday, I am one of these that doesn't like to pester people so feel bad about taking their time up, One other question, will I take tablets to combat Braf for the rest of my life or is it a short treatment period. 

    Many thanks Hel

  • Thank you Scott for replying and clearing up the Braf a little better for me with the quote. 

  • I think the treatment is for a year.  I took dab and tram for about 10 months in 2020, then it was stopped because I needed an operation on a BCC.   Now I'm waiting to hear whether another lump is going to be treated the same way.  The treatment for me had side effects of nausea and fatigue, but I was cured for a while!!

  • FormerMember
    FormerMember in reply to HelWWFC

    Hi H, the length that tablets are given for depends on the reason. 

    Adjuvant treatment is for a year that’s when people have had a spread but have had perhaps surgery to remove all the cancer and the tablets are to prevent it from coming back, incase there were very small particles to small to see on a scan that might grow.

    When I was first on Dabrafenib surgery was not possible as too many lymph nodes were affected and in several areas. Dabrafenib was given until it no longer worked, which for me was 8 months, the average quoted at the time was 11 months but on this forum I met a lady who had it for over two years until side effects took her off them, she later became no evidence of disease. We are all different when it comes to side effects and how well it works and the Dabrafenib and Trametinib combo had a higher average time of working, than just the single drug I was on. 

    I’m now on Encorafanib and Binimetinib for as long as it works so I will continue to have scans every 3 months to pick up any change in how I’m doing. I have a trial that I can go onto when a scan shows it’s not effective for me. Others where these tablets are their first treatment will move onto immunotherapy if they need it.