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← Return to Diagnosed with Ameloblastoma
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Hello and welcome to our tiny little club - so tiny that even the Rare Diseases organization doesn't have a group for us.
Conservative surgery (enucleation and curretage) on my ameloblastoma got me 15 years before recurrence. After the jawbone mostly regrew, they did a bone transplant from further back in my jaw and inserted 2 implant posts.
After recovery and getting the implants crowned - I had normal jaw function.
Targeted oral chemotherapy bought me another ~3 years. It shrank the tumor for awhile but eventually became ineffective. I'll be discussing options with my oncologist in a few months.
Most mandibular ameloblastomas have the BRAF V600E mutation, including mine - which is why there was an available targeted therapy.
Replies to "@rualto Hello and welcome to our tiny little club - so tiny that even the Rare..."
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@tomschwerdt that,s really interesting and instructive too.
You are right about the tiny club we,re in,the consultant said that they could have knocked him down with a feather when it came back as ameloblastoma.
I read about going down the chemo route,I will speak about this when I go back to clinic,it is great to speak to someone who has gone through all this.