Any experience with targeted therapy for BRAF V600E mutated tumor(s)?

Posted by Tom Schwerdt @tomschwerdt, May 21, 2023

So, it seems a fair number of tumors are caused by a local mutation designated BRAF V600E. There are specific targeted therapies for cancers with this mutation which are FDA approved, usually dabrafenib combined with trametinib. I was wondering if anyone here had experienced this treatment approach or were aware of an oncologist comfortable with this approach.
https://en.wikipedia.org/wiki/V600E
- FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid

My own case is a bit more complicated since for some reason the medical community designates the tumor destroying my jawbone (mandibular ameloblastoma) as "not cancer". From the literature I've read, the majority (and likely the vast majority) of mandibular ameloblastoma cases have the BRAF V600E mutation.

Interested in more discussions like this? Go to the Cancer Support Group.

Update from yesterday: my surgeon, Dr. Mohammed Qaisi was very open to not just gene sequencing my sample, but moving forward with potential BRAF/MEK inhibitors. He wasn't very aware of that option as a neoadjuvant treatment, but said he thought a surgical oncologist friend of his at Rutgers may have been involved in an earlier clinical trial or some other research with them. Dr. Qaisi was not a fan of the pathology report from my biopsy as the author didn't specify a subtype, and my prior oral surgeon didn't send over imaging. Based on the CBCT we took yesterday, he's fairly confident my amelo is conventional, but it looked like it could be unicystic.

I've reached back out to my prior doc to have her reach back out to the lab to basically re-write the pathology report AND conduct next-gen sequencing on the sample. Follow up with Dr. Qaisi is June 1 but, for now, I'm breathing a big sigh of relief that he's in my corner.

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Profile picture for phillisi88 @phillisi88

Hi Tom,

I know it’s been some time, but I was diagnosed with ameloblastoma last week (no subtype) and am meeting with a specialist surgeon here in Chicago tomorrow (Monday, May 4, 2026). Similar to you, though I’m 38, I wanted to know if there were treatments other than radical resection. The surgeon I’m meeting with published the *second* “jaw in a day” surgery, which is great, but still radical.

2+ years on, how are you faring?

@bellavoce were you able to get on with BRAF/MEK inhibitor treatment? If so, could you share a status update?

Tom, I hope you’re still here, your experience has given me hope in an otherwise hopeless situation.

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@phillisi88 I'd like to add my welcome. I'm tagging @tomschwerdt to make sure he sees your message directed to him.

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