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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Where did you choose to have your surgery? My son lives in Orlando, Florida and we are not finding surgeons or centers experienced with this. Some are willing to operate, but with ameloblastoma I don't think we need to be someone's first case. We are willing to travel if needed–and assume we will need to. Just trying to get options for him. Thanks.
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I can recommend two surgeons in Central Texas who have dealt with ameloblastomas – I have no information on treatment in Florida.
My original surgeon still practices in Temple, TX at the huge Baylor, Scott and White complex. He did want to do the more radical surgery on my first round (~2007) – but I opted for more conservative treatment.
My current oral surgeon in Austin did a fabulous job with the biopsy, and really knows ameloblastoma surgery. If I were going forward with surgery, I would be quite confident in him.
Let me know if you would like specifics.
I’m so sorry but I live in London and had my surgery in central London! Is there any way to research specialists, hopefully some of the other guys on here can help you to find a surgeon who can operate and I wish you and your son nothing but a smooth journey!
As someone who has had ameloblastoma I didn’t have any apparent symptoms until last august in which my dad noticed the right side of my face was swollen and as the weeks went on it was getting more and more uncomfortable to eat so I went to the dentist and their scans showed a cyst which was taken for a biopsy a month later which turned out to be ameloblastoma! It was very sudden and unexpected and like @hrhwilliam said not many physicians were familiar with the tumour so I opted for a high quality specialist to review my scans which led to the surgery to remove the tumour with the jaw reconstruction. Ameloblastoma often invades the mandible and can be cystic or not- that being said if it is ameloblastoma just know that while the process may be scary you’ve got this and you will never be placed in a situation you cannot handle. We’re always for you!
How do you feel after the first round of chemo? Like you said everyone has different paths that work for them and I’m glad that this is the best thing for you as that is the most important thing at the end of the day and not anyone’s opinions!
Thanks for asking! My head felt fuzzy for a few hours, but that's the only noticeable effect so far.
This is a targeted chemo, not the classic "IV bag in the hospital" chemo. It will be 5 pills a day (2+1 in the morning 2 in the evening.) Judging by the published biological half life numbers (138 hrs), it will probably be about a week before I get chemo levels up to to the "steady state" level in my bloodstream.
On a personal note – last baseline test was completed yesterday, and I started my targeted chemo an hour ago. Followup testing in about a month.
For anyone who hasn't read through the thread: I am opting for a nonstandard approach. It wasn't easy, and has limited evidence to support it. The evidence which exists is really good, and it's using FDA approved drugs (approved for other tumors with the same mutation) – so for me the risk is worth it.
My approach will not be the right approach for most people. I hope it works out and helps pave the way to becoming an accepted option sometime in the future.
@honeybear3 – They're right. Ameloblastoma is rare, often found on a dental Xray and you need a specialist to diagnose (under my insurance you would need a referral) – typically this specialist is an oral surgeon who will do a biopsy of the lesion and send that off to a pathology lab to identify. Both times I've had this done (2007 and 2023) results took over a month and the original pathologist had to send the sample to a specialty pathologist who eventually confirmed ameloblastoma.
Ameloblastomas are often called "not cancer" because they grow relatively slowly and the chance of metastasizing (ie creating tumors in other areas of the body) is quite low – about 2% in the literature I read. Mandibular ameloblastoma (jawbone) is usually caused by a specific mutation in the cell which becomes the tumor: BRAF V600E. This same mutation is found in about half of melanomas (the worst category of skin cancer) and a smaller percentage of a variety of other tumors.
Standard care is surgery to remove the lesion and some amount of bone around it. My oral surgeon said he would remove a 1.0 cm margin from the edge of the visible lesion in all directions – "radical resection and fibular flap". Other surgeons may have other standards – you do want one who understands ameloblastomas.
Just wanted to also add an update from me- almost 2 months post op and I feel really good. My mobility in the arm is getting back to normal and I am able to have harder foods now and my speech is normal as well, they said that my quick recovery is down to age as being relatively young has aided me massively in recovery. The only thing that I’m tackling most of the time is the fact that it’s still pretty swollen it’s slowly becoming smaller but you can tell my new bone is still trying to settle it’s way in!
Anbar04 you have made my week with your news. So happy to hear you are on the mend and well.
Thank you for your reply! Best to you!
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