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← Return to Diagnosed with Ameloblastoma
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Head & Neck Cancer | Last Active: Mar 2 7:57am | Replies (234)
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@lesleylbrown Happy to share my experience and hope that it continues to be helpful.
~80% of mandibular amelobastomas have the BRAF V600E mutation, and there is targeted drug therapy for tumors with that mutation.
That said, it's very early days for using that therapy for ameloblastomas with that mutation.
Since all the studies ended by ~6 months of treatment and I've been on the treatment for over a year - I may well hold the "world record" for longest BRAF V600E targeted treatment of an ameloblastoma.
As of the last CT scan, it still appears to be working at shrinking the tumor and regrowing bone - just slowly.
Replies to "@lesleylbrown Happy to share my experience and hope that it continues to be helpful. ~80% of..."
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I haven't been to the thread in a while but I thought I would come to check in!
We've had a few follow ups and the doctor is happy with the bone growth in the area where the ameloblastoma was removed. We will continue follow ups, slowly spacing them out. Basically just monitoring for reoccurrence.
Based on what you mentioned @tomschwerdt I did ask the doctor if we could check if the BRAF V600E mutation was present and it tested negative for the mutation.
I was kind of sadden by the news. I was hoping that maybe we had another treatment option to surgery in the case of reoccurrence.