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← Return to Diagnosed with Ameloblastoma
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Head & Neck Cancer | Last Active: 1 day ago | Replies (191)
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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.
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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.