Hello all- (sorry for the lengthy post)

Want to thank you all for sharing your stories. You are all inspiring! I’m the “third person” that @tomschwerdt mentioned re: targeted therapy at MD Anderson. I live in Seattle, but after doing a lot of research, chose to get treated at MD Anderson. My journey sounds very similar to the others here:
- Dec 2023 - Jan 2024: Loose tooth in right mandible (I’m missing a few teeth naturally, but it was 3rd molar) and started as minor pain like a bad cavity or tooth infection, slowly getting worse- no noticeable swelling.
- Apr 2024: Went to dentist - got standard dental panoramic x-ray and the look on her face was clearly concerned - she referred me to an oral surgeon.
- May 2024: Went to oral surgeon and had the tooth extracted and biopsy / tumor removed. The oral surgeon was also concerned with what he saw. Immediate pain relief, even before wound was healed. Got biopsy results within a week diagnosed as ameloblastoma. Referred to an Oral Maxillofacial Surgeon. Nerve damage from the tumor removal resulted in lower right facial numbness - have since recovered about 80% of sensitivity.
- Jun 2024: Met with OMF surgeon. I really did not like his bedside manner. I had done a lot of research and already knew that “radical resection” was considered the standard of care and was prepared to do it. But it became clear to me that he was looking at surgery as the only option. This makes so much sense to me now - classic hammer / nail situation. Since he is a surgeon, the only option was surgery. He told me that my research on BRAF targeted drugs was a waste of time and if I wanted to try that, I could call around to other doctors until someone said yes… I just wanted to have an open minded discussion about all the options - but he was the biased party, not me…
Jul 2024: Went back to my oral surgeon and asked for a referral to University of Washington. Since they are a research hospital / medical school, I thought I would get a more objective evaluation. They also started with surgery as the “standard of care” strong recommendation, but agreed to review my research and reexamine my biopsy sample for BRAF mutations. After sample was confirmed positive for BRAF v600 mutation, I was referred to UW Hutchinson Cancer Center / oncology.
- Aug 2024: While waiting for UW to call me to schedule a consultation, I did additional research and found @tomschwerdt ’s postings on a different forum. This led me to contact MD Anderson. MDA called me back within 48 hours and had me scheduled before I even heard from UW. My confidence in MDA is very high as they are the number 1 rated cancer treatment center in the US.

That leads to this week. After tomorrow’s appointments, I will have met everyone related to the surgical option:
- Head & Neck Surgeon
- Head & Neck Radiation Oncology (contingency only - not likely to have radiation therapy)
- Head & Neck Plastic Surgeon (they are responsible for harvesting the fibular flap and grafting it into the mandible)
- Oral Oncology
- Head & Neck CT
- Lower Extremity CT (bone donor site)

Next week:
- Medical Oncology (targeted therapy)

I will wait until I get the combined team recommendations from all the doctors and then evaluate / decide. But as @tomschwerdt mentioned, I would prefer a non-surgical approach. As I see it, ameloblastoma usually is relatively slow growing - so I can try the targeted (chemo) therapy and revert to the surgery if it doesn’t work.

BTW: Here is another medical journal article about BRAF targeted therapy: < < I’m not allowed to post links yet >> search google for “ameloblastoma raemy”
This patient was treated at the University of Lausanne in Switzerland and was a BRAF V600 positive young (teenage) female patient with good results. I spoke with Dr Raemy (lead author) and he also advocated for trying the targeted therapy first, monitoring, then only if necessary, reverting to surgery.