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Original 2007 biopsy and conservative surgery: Dr Lance Read at BSW in Temple
Recent 2023 biopsy: Dr Nolan Jenkins at Midtown Oral in Austin (2023)
If I were going through with the radical resection and fibular flap, I would have stayed with Dr. Jenkins. I am confident in him as a surgeon, and with his experience with ameloblastoma surgery in specific.
At MD Anderson in Houston, Dr Ann Gillenwater is heading up the team for my ameloblastoma. There were a lot of hoops to jump through before I started the dabrafenib-trametenib drug treatment targeting the BRAF V600E mutation this past Tuesday. MDA did the genetic screening after getting the pathology slides from the biopsy transferred to them.
I am not aware of any other hospital/doctor in the USA who is currently treating ameloblastoma with targeted therapy, and I think I'm the first for MDA.
As far as I know Stanford did one research case study (ie one person) treating ameloblastoma with the dabrafenib-trematenib treatment I am on. It worked at shrinking the tumor and regrowing bone. I haven't seen a long-term followup.
The biggest ameloblastoma targeted treatment study I could find was out of Israel and came out last year - still small with only 12 patients using targeted drug treatment (half got dabrafenib-trametenib, half just got dabrafenib) 100% showed significant tumor shrinkage and bone regrowth. Again, no long-term data.
According to my oncologist at MDA, the dabrafenib-trametenib combo typically has fewer side effects than straight dabrafenib - but that's based on use in melanoma and other cancers.
Side effects for me so far are mostly just being more tired. The first day I had trouble focusing, but that went away and could have been unrelated, or just the stress of waiting and anticipation coming to an end. On a positive note, the aching in my jaw has gotten less frequent.
Feel free to PM me if you would like to go into more detail.
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Hi Tom, good luck with your targeted treatment.
Here is my story:
I was recently diagnosed with Ameloblastoma in my Maxilla bone, it took one year for the diagnosis after visiting several doctors (dentist, endodontist, internal medicine, oral/maxilla facial pain, orthodontist). By then, the tumor became large per CT scan done by ENT specialist at PAMF in Mountain View, CA.
The biopsy sample was tested by 2 different institutions to confirm it was Ameloblastoma benign tumor. The PAMF doctor who did my biopsy referred me to Stanford Oral/Maxillofacial Department in Feb 2023. It took them 3 months to give me a surgery date because it involved 2 surgeons from 2 different departments (1 surgeon from Oral/Maxillofacial Department for tumor dissection and 1 from head/neck oncology department for reconstruction).
After the complex surgery for 10 hours, they did an emergency redo within 24 hours on flap because it was missing blood flow, I was able to recover with ups and downs for the flap to survive. Stanford pathology came back after 4 weeks saying it was Ameloblastic Carcinoma with no BRAF mutation. So Stanford medical oncologist mentioned that I had to go through surgery/radiation treatment and no chemo/medical treatment. I went through surgery by then, so radiation was the next step. But my Head/Neck Oncologist performed another CT & MRI and found out that another tumor split from main tumor and started eating bone in the skull base. So they had to perform another surgery before going radiation.
I finally went for second surgery with neurosurgeon to remove that newly discovered tumor and the same Head & Neck Oncologist to remove extra margins from the first surgery location. Radiation therapy was started after 5 weeks of second surgery and 11 weeks of first surgery. Radiation was planned for 33 sessions everyday M-F and now I am in recovery mode.
In Summary, here are the timelines I went through:
Jan 2022-Jan 2023: Dentist, Endodontist, Kaiser PCP, Kaiser Oral/Maxillofacial Pain MRI test, changed insurance because wasn't happy with Kaiser
Feb 2023: Orthodontist who discovered lost Maxilla bone, PAMF ENT doctor biopsy
Mar 2023: PAMF pathology, UTSW pathology, UCSF Head & Neck, UCSF MRI, UCSF biopsy slides review, all confirmed that Ameloblastoma benign tumor
Apr 2023: Stanford surgeons meetup, leg CT scans for reconstruction
May 2023: Stanford tumor resection & reconstruction surgery
June 2023: Stanford pathology confirmed that Benign turned into Carcinoma from removed bone tests and tumor mass tests
July 2023: Neurosurgeon skull base surgery
Aug 2023: Radiation started
Sep 2023: Radiation ended
Oct 2023-Current: Recovery