BRAF – get diagnosed first
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

BRAF – get diagnosed first

› Forums › General Melanoma Community › BRAF – get diagnosed first

  • Post
    • May 12, 2017 at 5:01 pm
    meltedtime
    Participant

    I was diagnosed with stage 4 melanoma on March 24th. My oncologist wanted me to immediately start the Braf treatment as my tumors were typical of melanoma with the Braf gene.  He said there was no risk, it would either work or not. Side effects would be the same regardless. 

    In BC the oncologist have a panel to review drug administration and approve variances, such as providing me with the meds prior to final test results. One doc on the panel delayed the approval as he believed it could potentially increase the size of the tumors if I wasn't Braf positive. My doc overruled through appeal and I started the meds. Thankfully, only for 1 week. I don't have the Braf gene. 

    The meds gave me a massive headache within 2 days. And my tumors grew visibly. 7 days wouldn't have made much difference had we waited. Now I have further growth as a result of my oncologists decision to push. 

    Make sure to get a true diagnosis before taking the Braf meds.

Viewing 0 reply threads
  • Replies
      • May 12, 2017 at 5:06 pm
      jennunicorn
      Participant

      That is so strange, sorry you had to deal with that. In the US our insurance would never approve BRAF targeted drugs until they had the test results showing we are BRAF positive, so there is no way we would be able to take it prior to results. Hopefully you can get on a good treatment plan like Keytruda or Ipi/Nivo now.

Viewing 0 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.