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Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: Jan 3 11:47pm | Replies (229)

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@tomschwerdt

@lesleylbrown

Be sure to discuss different surgery options and get additional opinions. It's a slow growing tumor. Make the right choices for your family. It's a SUPER rare tumor, so I echo what @hrhwilliam says - I would be sure to get a consultation at a top center like Mayo, MD Anderson, etc. I'm in Texas, so I ended up at MD Anderson this time.

I had conservative surgery (jaw preservation surgery) when I originally had the ameloblastoma detected in 2007. It took about 15 years for the ameloblastoma to grow back to similar size.

A couple of years ago, a genetically targeted drug regimen (targeted chemotherapy) was approved by the FDA for BRAF V600E tumors, which is the mutation in ~80% of mandibular (jawbone) ameloblastomas. I take 5 pills a day and the tumor is slowly shrinking/bone regrowing.

I was the first ameloblastoma patient to get this treatment at MD Anderson on Houston, starting last October. Months ago I found out that a second ameloblastoma patient started getting this treatment. A third person that I met on a different forum is headed there for an evaluation next week.

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Replies to "@lesleylbrown Be sure to discuss different surgery options and get additional opinions. It's a slow growing..."

Thank you so much for your words of advice @tomschwerdt and @hrhwilliam

We are scheduled for an appointment tomorrow. We were referred to UTMB in Galveston, which is awful timing due to a newly developed hurricane in the gulf! Hoping this doesn't affect our travels (probably about an hour away).

I look forward to asking questions and getting more information. @hrhwilliam the first question I have on my list is what is the doctor's experience dealing with ameloblastoma.

@hrhwilliam @tomschwerdt @anbar04 i have a list of questions to ask, but if there is anything important you can think of that I should ask please, let me know! Any information would be greatly appreciated.

@tomschwerdt How are you doing with the chemotherapy? Have you had any side-effects? I'm hoping for a conservative surgery since my son is so young. If conservative surgery isn't an option, i would be nice to have another option instead of going directly for a jaw resection 🙁