Diagnosed with Ameloblastoma

Update: BRAF V600E is confirmed, and the medical oncologist is starting the process to start drug treatment.

Next appointments at MDA are scheduled in a week. Should be a full Monday - since the first appointment isn't til 11AM, I plan to just drive in that morning (~3hrs, plus traffic)

Now that I'm in their system, progress toward treatment seems to be much faster. next Monday will be 2 weeks after the initial visit. I'm impressed with the thoroughness of their appointment notes, and how quickly they were posted.

Initially pre-scheduled tests (Xray, generic CT) were cancelled at the first appointment, to be replaced with a dental cone beam CT next Monday. This makes more sense to me. More convenient as well, as it's "in office" for one of my appointments instead of having to drive ~20 miles to a large scale CT.

No updates on the genetic/BRAF screening - but in my experience most doctors want to initially discuss results directly with the patient rather than just drop a report in the system.
https://www.radiologyinfo.org/en/info/dentalconect

Thank you guys so much I feel so supported!! Recovery is going well I have so much more mobility now and in terms of eating I’ve moved up to a soft diet which is good. The only thing is I do have a slight infection in my mouth which leaks out of my neck I’ve been given antibiotics and I have an appointment tomorrow which will hopefully give me more insight but other than that I feel really good and happy with where I am in terms of recovery especially since it’s not even been a month yet.

@anbar04 How's the recovery coming along? We're all pulling for you!

Looks like Novartis has two programs to significantly reduce out of pocket costs:

If you have private insurance: https://copay.novartisoncology.com/

If you have no prescription insurance: https://www.novartis.com/us-en/patients-and-caregivers/patient-assistance/patient-assistance-foundation-enrollment

And it's "Game on!"

After making sure I was aware that radical surgery is the standard practice and I babbled about the research for a bit, the doctor let me know she is quite familiar with BRAF targeting drugs for cancer tumors and is impressed with their performance.

BRAF screening test is ordered. After that I will have an appointment with the medical oncology group to discuss treatment details.

Well, with the main appointment 8AM Monday, mid to late Friday afternoon saw 2 additional appointments appear (Xray and CT) and my first MDA test result: They reviewed the pathology slides in house and agree "Ameloblastoma" No attempt at subtyping.

Xray is also Monday morning, but apparently the CT is backed up and didn't have a slot til 6:45AM on Thursday!

I expect we'll have a better game plan after the 8AM appointment.

There are quite a few discussions about clinical trials, some focused on specific conditions and others more general in nature.
https://connect.mayoclinic.org/search/discussions/
This might be of interest to you about people's experiences with clinical trials
- Have you ever taken part in a Mayo Clinic study?
https://connect.mayoclinic.org/discussion/mayo-study/

Thanks for the support, William!

I just had a thought - it might be good to have a general group for discussing participation in clinical trials, since the topic may be relevant to so many different conditions. For example, the trial I am interested in is the lowest risk category - it's a Phase IV trial using drugs which are already FDA approved for other conditions, so the behavior in humans and likely side effects are well understood.
https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/phases-of-clinical-trials.html
https://www.clinicaltrials.gov/study/NCT05868629
What do you think @colleenyoung ?

Hey Tom,
Keep up the posts. You really know your stuff for a non-medical and I for one appreciate your input and information. Good Luck in Houston.