1. < Head & Neck Cancer

Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

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.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

kkd | @kkd | Oct 13, 2023
In reply to @tomschwerdt "On a personal update: About 5 days after starting the targeted drug therapy I realized that..." + (show)
@tomschwerdt

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.

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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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1 reply
anbar04 | @anbar04 | Oct 13, 2023
In reply to @hrhwilliam "@anbar04 Anbar you are my Connect Hero this year. Your battle, your recovery, your input carries..." + (show)
@hrhwilliam

@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

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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💕💕

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Oct 13, 2023
In reply to @anbar04 "I’m so happy that the targeted therapy is working for you and you took a leap..." + (show)
@anbar04

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!

Jump to this post

@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

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1 reply
anbar04 | @anbar04 | Oct 13, 2023
In reply to @tomschwerdt "On a personal update: About 5 days after starting the targeted drug therapy I realized that..." + (show)
@tomschwerdt

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.

Jump to this post

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!

REPLY
1 reply
Tom Schwerdt | @tomschwerdt | Oct 13, 2023

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.

REPLY
2 replies
Tom Schwerdt | @tomschwerdt | Oct 13, 2023
In reply to @kkd "Did they do dentures too Anbar when they did the bone reconstruction? They did not do..." + (show)
@kkd

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?

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@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.

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city | @city | Oct 13, 2023
In reply to @kkd "I understand the pain and nervousness you are going through. On the +ve side, they found..." + (show)
@kkd

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.

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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 ...💕

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city | @city | Oct 13, 2023
In reply to @anbar04 "First of all it’s ok to be nervous especially when it comes to your own child..." + (show)
@anbar04

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 💕

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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...

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anbar04 | @anbar04 | Oct 12, 2023
In reply to @kkd "Did they do dentures too Anbar when they did the bone reconstruction? They did not do..." + (show)
@kkd

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?

Jump to this post

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.

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kkd | @kkd | Oct 12, 2023
In reply to @anbar04 "First of all it’s ok to be nervous especially when it comes to your own child..." + (show)
@anbar04

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 💕

Jump to this post

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?

REPLY
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