Diagnosed with Ameloblastoma

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.

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.

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💕💕

@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

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!

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.

@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.

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 ...💕

Thanks a lot @anbar04 ... really love your inspiring word .. yes always remind that we will never be put in a situation in which we cannot handle... Thanks💕 get well soon anbar...

Just like you I only have had the jaw reconstruction and they said that this is because they can’t anticipate if the new bone is strong enough to handle the dentures so instead I’m going to have to wait around 3 months for a scan to be done to assess the durability of the bone and then from there they’ll do the dentures.