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.
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Thank you for your reply! Best to you!
William, I wonder what were your first symptoms of the ameloblastoma? Was in to dentist for a routine cleaning about a week ago but also went ahead and had them do a conebeam CT scan since I'd been having pressure-like pain on the top right back teeth for awhile. Turns out that there's a "lesion" of some sort in that area but haven't yet gotten back the rad report. Did you have symptoms like this at all and was a lesion seen on dental scan? Ameloblastoma keeps coming up when researching so was curious how it all started for you.
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Hi @honeybear3. I myself have not had Ameloblastoma, only the similar surgery that others have had such as @anbar04.
As I understand this tumor, it likes to grow primarily on the mandible or lower jaw. It isn’t considered cancer as it doesn’t spread but it is still an uncontrollable growth.
It is also rather rare. Most physicians have never seen it nor know anything about it. That said, it would be best to seek out those who have experience with it, if indeed this is what it is. You may have to wait for results. Also it does not seem to be a fast growing tumor as many live with it for years although it can become uncomfortable and disfiguring.
Take a look at some good medical websites including Mayo Clinic.org . Learn what you can and then seek the best to help you. And when it’s under control, hug your dentist.
Hello @city, I’m sorry I was off line for most of the day and didn’t see this post right away.
I have no eating issues other than what cancer radiation left me with over twenty years ago. The mandible surgery and prosthetic teeth implant has actually improved my ability to chew.
I had to pass a swallow test before I was discharged from hospital but really have had no new issues with swallowing.
Speech was a bit distorted until my teeth were replaced. I also have a numb area on my lower lip and chin but have managed after a bit of practice to get the straw in my mouth from my root beer float on Saturdays which I enjoy so much.
14 years old is hard to imagine having to go through any surgery let alone one that will require healing in both the head and leg at the same time. It will be ok because she will heal.
I have a nifty long scar on my leg that when asked I just say “don’t swim with sharks.” The jaw scar blends into the folds of the neck so it’s not bad at all. The smile is a bit of a “pirate” smile and it’s good to be unique. As I say to all who ask, Courage! She will be fine.
Any questions as she goes on this journey please just ask.
When does this happen for her?
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.
@anbar04 How's the recovery coming along? We're all pulling for you!
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.
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
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.
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