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April 23, 2014 at 11:26 am #21937buffcodyParticipant
After twice finding no BRAF mutation on testing while beginning my melanoma journey, my latest report on a total genome study of my most recent met found one. This one is known as BRAF G469R. On my visit to my oncologist last week because of this finding, he mentioned as a possible next treatment the use of a BRAF inhibitor. I asked if there were any literature he was familiar with on the efficacy of this treatment with the type of BRAF mutation I have and he was not. A little searching on the net found me a little info on the mutation but what I have found has only left me that among BRAF mutations this one is found less than 1% of the time. Anyone heard of G469R or, perhaps, have it? Any knowledge about the use of inhibitors with it? I apparently have a new tumor on the brain (very small), which will probably be radiated very soon and one or more in the intestinal area, which is still being investigated but will probably be dealt with by some new systemic approach (I have already had ipi) and/or a BRAF inhibitor.April 23, 2014 at 4:16 pm #64197kylezParticipant Frank,
Sorry to hear about the 2 new possible setbacks.
My first BRAF test in 2010 also showed a different (rare I think) G466E BRAF mutation. But none of my oncologists so far have seemed to feel that particular one would help target a treatment. They seem to consider that a wild-type mutation even though it’s on BRAF.
I met someone at UCSF recently who had very immediate and dramatic response to an AKT+MEK combo trial here (albeit that’s one person). There are some trials for pan-RAF inhibitors that don’t require any particular mutation. There are some targeted treatment trials for wild types now.
Good luck with the radiation treatment if that’s what’s decided.April 23, 2014 at 8:02 pm #64198
Sorry to hear about the progression. You would qualify for the PD1 expanded access once you get the brain met cleared up. Can they do surgery on the intestinal met? I haven’t heard of your mutation, but asked our advisory board for their opinion. There should be a PD1 program in your area in a few weeks hopefully.April 23, 2014 at 11:57 pm #64199
According to BRAF expert and our scientific advisory board cochair, Keith Flaherty, your mutation is the type that responds to the MEK drugs (Mekinist by GSK is approved for perscription)
But not appropriate for BRAF drugs.April 24, 2014 at 10:07 am #64200buffcodyParticipant
Thanks, Kyle and Catherine. What a great Forum to belong to! I’ll share Dr. Flaherty’s comment with my oncologist He will be glad to get this info about BRAF and MEK inhibitors and their effect on a mutation of my sort. So am I.
The gastroenterologist who will do a scope on my intestine last week said it is doubtful that surgery would be recommended for lesions in that area since the operations are frequently so difficult. But we don’t really know yet what is down there and where. I’ll let you know when all the reports are in, and we may take a trip to Sloane at that time before proceeding to consult with Dr. Chapman.
FrankApril 24, 2014 at 11:55 am #64201
Happy to help Frank and hope you do get that second opinion at Sloan. I would also check with Dan Coit there, the surgical oncologist about the intestinal mets. I know many patients who have had those surgically removed as you don’t want a future blockage to occur. But second opinions are always good! Keep in touch.
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