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← Return to Diagnosed with Ameloblastoma
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Head & Neck Cancer | Last Active: 2 days ago | Replies (237)
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@tomschwerdt again for all the insight you've provided. It definitely helps us feel a little more in control of of uncontrollable situation, as far as knowing what the options are and hearing everyone's experiences.
The doctor said he thinks there is a 50/50 chance of reoccurrence. I sent a message to see what his doctor thinks about genetic testing and other treatment options.
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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.