Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

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

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

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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

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@tomschwerdt

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

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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.

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

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

If you have private insurance: https://copay.novartisoncology.com/?name=tafmek

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

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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.

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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.

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@tomschwerdt

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 ?

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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/?search=clinical+trials
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/

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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 ?

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@tomschwerdt

On a personal note, my initial appointment at MD Anderson is just under a week away (well, a week minus 1.5 hours).

I know I'm taking a nonstandard approach, but as I've mentioned before: Exploring the option of targeted therapy and possibly a clinical trial is right for me. I totally support those of you who choose conventional surgery. I know that I don't think like most people, and I've been deeply involved in (non-medical) research for decades. Heck, I may end up with conventional surgery anyway. We will see where it goes.

Unless someone objects, I'll post updates as it goes. Initial appointment should be setting up the game plan for the rest of the week – potentially other appointments, tests, etc. Feel free to ask any questions you have!

I have to say, it's been really frustrating how slow this process is going – and especially how I'm having to prod various offices to send over medical records & samples after they spent weeks being nonresponsive to MDA requests. (oral surgeon and pathology lab being the pain points). I presume that genetic testing still needs to happen to determine whether I actually have the BRAF V600E mutation (probably 80% of mandibular ameloblastomas have this mutation). There is already an FDA approved drug therapy for several cancers (Melanoma, etc) which have this mutation – but no approval for ameloblastoma specifically.

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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.

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