Diagnosed with Ameloblastoma

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.

Did they do dentures too Anbar when they did the bone reconstruction? They did not do dentures at Stanford for me, they only did maxilla bone and palate reconstruction. I wonder how they do dentures now?

I understand the pain and nervousness you are going through. On the +ve side, they found it early, did they find it in dental x-rays? Hope all the dentists are trained on this.

First of all it’s ok to be nervous especially when it comes to your own child but I will say this while the first few months may be challenging, you and your daughter can get through it if you maintain your support and willingness to be there throughout the big changes and the small ones. When it gets difficult do not be afraid to share the strength with your daughter and remind yourself that you will never be put in a situation in which you cannot handle. Your daughter is young and I can never imagine how she is coping but know that at the end of all this she will most definitely be a better and more brave person than she was before so there is endless positives to this journey!

My personal experience was that we did a full reconstruction of my jaw straight away we didn’t opt for the smaller resections just because I waited for my surgery to be after my school exams! Feel free to ask any questions we’re all here and keep us updated and remember everything will fall into place 💕

Did they do dentures too Anbar when they did the bone reconstruction? They did not do dentures at Stanford for me, they only did maxilla bone and palate reconstruction. I wonder how they do dentures now?

First of all it’s ok to be nervous especially when it comes to your own child but I will say this while the first few months may be challenging, you and your daughter can get through it if you maintain your support and willingness to be there throughout the big changes and the small ones. When it gets difficult do not be afraid to share the strength with your daughter and remind yourself that you will never be put in a situation in which you cannot handle. Your daughter is young and I can never imagine how she is coping but know that at the end of all this she will most definitely be a better and more brave person than she was before so there is endless positives to this journey!

My personal experience was that we did a full reconstruction of my jaw straight away we didn’t opt for the smaller resections just because I waited for my surgery to be after my school exams! Feel free to ask any questions we’re all here and keep us updated and remember everything will fall into place 💕

Thanks for sharing... Really appreciate it. Long journey to recover... I feel nervous to wait for my daughter resection next month, she's only 14... diagnosed with unicystic ameloblastoma. Next month the OMFS will do the marginal resection and after 6 month they will do the reconstruction...
It's really helpful when reading your experienced and situation... Get well soon @kkd

@anbar , really happy to read your update! I'm nervous waiting for my daughter surgery next month. Hope everything goes smooth. Anbar, may I know what kind of resection you went through? According to my daughter case, the oral surgeon will do the marginal resection, which preserve the continuity of the mandible. Is this similar with your case? Or you went through the segmented resection?

Just wanted to also add an update from me- almost 2 months post op and I feel really good. My mobility in the arm is getting back to normal and I am able to have harder foods now and my speech is normal as well, they said that my quick recovery is down to age as being relatively young has aided me massively in recovery. The only thing that I’m tackling most of the time is the fact that it’s still pretty swollen it’s slowly becoming smaller but you can tell my new bone is still trying to settle it’s way in!