Diagnosed with Ameloblastoma

Thanks for responding @kkd... yes they found it in dental x ray... Speechless at first, because I have zero knowledge about it but when I join this group 2 months ago, lots of information I've got especially about the true experienced of the patient. Thanks a lot for those who shared the experience. Get well soon kkd ... Always update about you , ok ...💕

@kkd Back in 2007 when I had my original conservative surgery, the sequence was: Scoop/carve out the jawbone, wait for the bone to regrow as far as it can, transplant a small amount of bone from the back of the jaw to fill in, wait for it to heal, install posts, wait for it to heal, install implants.

Both in 2007 and in 2023 the dentist found it and sent me off to an oral surgeon for biopsy. Same dental practice, but my original dentist retired a few months before my second round was discovered.

On a personal update: About 5 days after starting the targeted drug therapy I realized that the aching in my jaw around the tumors was noticeably reduced. After a week, the aching basically stopped. I'm still definitely more tired than I should be, and probably my focus is a bit worse - but I haven't noticed any other side effects yet. Maybe reduced libido.

I don't really know how I should refer to the debrafnib + trametinib treatment I am on. Drug therapy? Targeted therapy? Genetically targeted therapy? Chemotherapy? Oral chemotherapy? Genetically targeted chemotherapy? They're definitely considered chemotherapy drugs, and I have to take precautions to not expose anyone else (I'm using a separate bathroom, washing clothes separately, immediately wash my hands thoroughly after handling the meds, etc). I just feel like I'm misleading people or overstating things if I refer to it as chemotherapy without going into details - usually when people hear "chemotherapy" they think of going into a treatment center for hours on an IV.

Yes, I'm probably overthinking things - I've done that my whole life. Outside perspectives are welcome. Any vaguely relevant questions are welcome.

I’m so happy that the targeted therapy is working for you and you took a leap of faith and it has paid off, you’ve got this! In terms of what to refer your treatment as I think it depends on your own personal preference, like you said it is chemotherapy and if you think that fits you more then call it that and if people do have questions then you can go into that detail, I think when it comes to your treatment remember that it’s your treatment and you don’t have to define it based on other people!

@anbar04 Anbar you are my Connect Hero this year. Your battle, your recovery, your input carries far more value to this world than anything Taylor Swift could ever put on stage. You uplift everyone you connect with. Thanks for being you.
HRH William

Aww thank you so much honestly hearing how proud you are of my journey and the compliments to my character means more to me than I can express in this message! I truly do look up to everyone in this group and you’ve all made my journey seem much less daunting and much more fulfilling I truly do pray and wish the best for everyone here because we deserve the most happiness that the world can give us! I feel so honoured to be the connect hero it’s the most beautiful and rewarding thing I’ve received, thank you💕💕

Not sure if it will help you, Tom, but I heard from patient stories that went through thyroid cancer take pills for radiation instead of going under the machine and they isolated themselves for a few days while they were on that medication. It sounded very similar from your description. Another thing I noticed you mentioned tumors, were there multiple tumors? My neighbor had multiple tumors too. Is it Ameloblastoma behavior that it gets split into multiple tumors? I am trying to relate my 2 tumors into that behavior.

Hey @kkd I'm going to be on these chemotherapy pills for awhile, so it's really not practical to completely isolate myself. I'm not sure how long, but I expect at a minimum it will be multiple months since the 1-month appointment tests don't include any imaging, just making sure that the chemo isn't harming my other systems too badly (blood tests, EKG, Echocardiogram). I'll be asking the MDA team when they expect to do imaging to check on how things are changing (hopefully improving!)

Thyroid cancer can use radioactive iodine to physically target where most of the radioactivity ends up, since the thyroid gland is the primary collection point for iodine in the body.

My pills aren't radiation - they're a combination of one which genetically targets the mutation in my tumor (BRAF V600E mutation) and a second drug which slows metabolism/excretion of the first drug, and according to my oncologist reduces side effects somehow.

Back in 2007 I had one tumor. Now I have two - which really shouldn't be surprising. To me it looks like they came back from two locations along the margins of the original conservative surgery.

While I'm not thrilled they came back, at least they were spotted sooner than if I'd done the original resection plan the oral surgeon proposed - the titanium plate would have blocked the X-rays. Even with aggressive resection, ameloblastoma can definitely recur.

I guess my only real regret from treatment of the original 2007 tumor is that after the initial 5 years of monitoring and being pronounced "cured" - I didn't ask to continue monitoring. Might have been able to catch this sooner if I had.

Since I seem to be getting deep into the technical weeds, I feel that I have to put forth a disclaimer again: I'm not a doctor, and while my job is overseeing research projects - it's not even close to medical research. I'm just sharing my experiences and my understanding of what I've read in reputable medical literature (generally off the NIH Pub Med.) It's entirely possible I'm unaware of some context a medical professional would understand. Talk to your doctors for actual medical opinions.

@colleenyoung Just want to make sure I'm still operating within community guidelines.

@anniecl, you might reconsider Mayo Clinic in Florida. All Mayo Clinic locations use the same collaborative team approach. This includes collaboration with specialists from all locations.

You can read more here:
- What makes care at Mayo Clinic different? https://www.mayoclinic.org/patient-centered-care/what-makes-mayo-clinic-different
"Teams of specialists. Genuine collaboration. Focused on your health and safety.
Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives.

Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world."

If you'd like to inquire more, you can contact Mayo Clinic and ask specific questions http://mayocl.in/1mtmR63

-We lived in Menlo Park and I worked as a nurse at Stanford for over 20 years, about 20 years ago. Still have lots of friends in the area.
-Does Stanford have a team that routinely performs ameloblastoma surgery/reconstruction? -My son (23 years old living in Orlando, FL), had oral surgeon remove a mandible jaw "cyst" in August 2023. They said no biopsy needed, they would just take out the whole thing. Pathology report came back with ameloblastoma. Now after 3 months healing he just saw head and neck surgeon (Fawaz Makki) in Orlando who operates at an Advent Health hospital nearby. The newest CT shows they didn't get it all. (No surprise there.)
-I've looked at Stanford but cannot tell if they perform the surgery with fibula FF often and if they have a team approach to the surgery/post-op recovery--nurses on the post-op floor familiar with care, PT familiar with the fibula surgery and know what kind of care/exercises are needed, etc. We live in Rochester, NY--so will most likely have to fly wherever we go for surgery. Mayo is definitely on our list of options but need to know more about Stanford before getting a 2nd opinion there. Who were your surgeons? Do you know how often they perform this surgery?
_Thank you in advance and continued success with your recovery.
Annie