Drug treatment of ameloblastoma associated with BRAF V600E mutation - datamining/contacts help requested

[Tom the Melaniephile]

@mooner As a heads up on the genetic testing, I suggest bringing (or better yet also uploading to MyChart) the contact information for the pathologist who identified ameloblastoma. MDA was able to get a sample from my pathologist for the genetic testing.

 

[mooner]

Ya, MD Anderson already said they wanted the biopsy sample to see and test themselves... Hopefully UW pathology can send whatever they have left... Uploaded test results and CT images that I have via MyChart...

 

[Tom the Melaniephile]

As a followup, CT from yesterday showed another 1-2mm of bone regrowth, depending on the dimension.

 

[mooner]

As a followup, CT from yesterday showed another 1-2mm of bone regrowth, depending on the dimension.

Nice! Did they give you any indication of how long they recommend you stay on the targeted therapy?

 

[Tom the Melaniephile]

Nice! Did they give you any indication of how long they recommend you stay on the targeted therapy?

Nope. The side effects have been under control for quite awhile now, so there doesn't seem to be any urgency to end the treatment.

 

[mooner]

After tomorrow’s appointments, I will have met everyone related to the surgical option:

• Head & Neck Surgeon
• Head & Neck Radiation Oncology
• Head & Neck Plastic Surgeon
• Oral Oncology
• Head & Neck CT
• Lower Extremity CT (bone donor site)

Next week, targeted (chemo) therapy:
- Medical Oncology

Just for the record, MD Anderson has been great. Frequent and detailed communication is almost bordering on excessive. But every single discipline extracts a co-pay from you, so it can feel a little transactional…

 

[mooner]

Here’s the 1 patient ameloblastoma BRAF targeted therapy study (May 2024) I found from University of Lucerne (Switzerland):
https://www.mdpi.com/2072-6694/16/12/2174

 

[mooner]

I was wondering what Oral Oncology was about… They are dentists that participate in the surgical option… They would handle any tooth extractions at the start of jaw resection and install any implants (if possible) on the graft bone. They can also help with prosthetic teeth or bridge later.