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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Hey, @anbar04 - I hope things went well with your surgery last Saturday.
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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!
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.
Hey, @anbar04 - just checking in on you! I hope the recovery is going well and you're doing stairs again!
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.
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.
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.
What do you think @colleenyoung ?
There are quite a few discussions about clinical trials, some focused on specific conditions and others more general in nature.
This might be of interest to you about people's experiences with clinical trials
- Have you ever taken part in a Mayo Clinic study?
Well, with the main appointment 8AM Monday, mid to late Friday afternoon saw 2 additional appointments appear (Xray and CT) and my first MDA test result: They reviewed the pathology slides in house and agree "Ameloblastoma" No attempt at subtyping.
Xray is also Monday morning, but apparently the CT is backed up and didn't have a slot til 6:45AM on Thursday!
I expect we'll have a better game plan after the 8AM appointment.
And it's "Game on!"
After making sure I was aware that radical surgery is the standard practice and I babbled about the research for a bit, the doctor let me know she is quite familiar with BRAF targeting drugs for cancer tumors and is impressed with their performance.
BRAF screening test is ordered. After that I will have an appointment with the medical oncology group to discuss treatment details.
Looks like Novartis has two programs to significantly reduce out of pocket costs:
If you have private insurance: https://copay.novartisoncology.com/?name=tafmek
If you have no prescription insurance: https://www.novartis.com/us-en/patients-and-caregivers/patient-assistance/patient-assistance-foundation-enrollment
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