Diagnosed with Ameloblastoma

There are quite a few discussions about clinical trials, some focused on specific conditions and others more general in nature.
https://connect.mayoclinic.org/search/discussions/?search=clinical+trials
This might be of interest to you about people's experiences with clinical trials
- Have you ever taken part in a Mayo Clinic study?
https://connect.mayoclinic.org/discussion/mayo-study/

Thanks for the support, William!

I just had a thought - it might be good to have a general group for discussing participation in clinical trials, since the topic may be relevant to so many different conditions. For example, the trial I am interested in is the lowest risk category - it's a Phase IV trial using drugs which are already FDA approved for other conditions, so the behavior in humans and likely side effects are well understood.
https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/phases-of-clinical-trials.html
https://www.clinicaltrials.gov/study/NCT05868629
What do you think @colleenyoung ?

Hey Tom,
Keep up the posts. You really know your stuff for a non-medical and I for one appreciate your input and information. Good Luck in Houston.

On a personal note, my initial appointment at MD Anderson is just under a week away (well, a week minus 1.5 hours).

I know I'm taking a nonstandard approach, but as I've mentioned before: Exploring the option of targeted therapy and possibly a clinical trial is right for me. I totally support those of you who choose conventional surgery. I know that I don't think like most people, and I've been deeply involved in (non-medical) research for decades. Heck, I may end up with conventional surgery anyway. We will see where it goes.

Unless someone objects, I'll post updates as it goes. Initial appointment should be setting up the game plan for the rest of the week - potentially other appointments, tests, etc. Feel free to ask any questions you have!

I have to say, it's been really frustrating how slow this process is going - and especially how I'm having to prod various offices to send over medical records & samples after they spent weeks being nonresponsive to MDA requests. (oral surgeon and pathology lab being the pain points). I presume that genetic testing still needs to happen to determine whether I actually have the BRAF V600E mutation (probably 80% of mandibular ameloblastomas have this mutation). There is already an FDA approved drug therapy for several cancers (Melanoma, etc) which have this mutation - but no approval for ameloblastoma specifically.

Hey, @anbar04 - just checking in on you! I hope the recovery is going well and you're doing stairs again!

Hooray! So happy to hear you are on the mend and you are getting up and about. Fun stuff eh? Hope it all works out well for you.

Thank you everyone for all the support i appreciate it so much it’d genuinely gotten me through everything much smoother! It’s been a week and I am currently onto a soft diet and I can walk around a bit we’re tackling stairs on Monday but I think the first few days were hard and I didn’t expect the jaw to be so stiff!

Hey, @anbar04 - I hope things went well with your surgery last Saturday.

Well, once you have it - please don't feel obligated to post here immediately unless you really want to. We'd all like to know, but your recovery comes first.

Nothing like living on pins and needles for another five days. Hugs kiddo. You will be alright.