Looking for others with NSCL BRAF mutation

barbra1999
barbra1999 Member Posts: 1 Member

Hello,

I was just wondering if anyone is on Braftovi and Mektovi and how is your experience with these medications. I have been on them for 1 month now and have had quite an improvement in my symptoms. I do have fatigue and some muscle pain in the evenings, but not enough to stop my day. Just wanted to connect with people in the same situation. I have looked and unable to find a support group for this in my area. Thank you!

Comments

  • eDivebuddy
    eDivebuddy CSN Member Posts: 139 Member
    edited 2:19AM #2

    @barbra1999 are you still here? Over on lungivity theres a person who's wife is about to start this in a couple of days if you're willing to give them some feed back.

    https://forums.lungevity.org/topic/53756-pet-scan-tomorrow-biopsy-to-follow/page/3/#findComment-461499