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#196421 - 05/12/18 06:59 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Thanks Paul, I would love to read that article! I will PM you my private email in case that's an easier way to send it. Thanks again!
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
#196422 - 05/12/18 07:54 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117
NYC
I hope you can open it. It’s a pdf file.

free-flap-2002-05-slides.pdf

This is not it, but close! I think this may open!

https://www.utmb.edu/otoref/grnds/Free-flaps-041020/Free-flaps-041020-slides.pdf


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196423 - 05/12/18 08:50 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Thank you Paul! Interesting reading! I find it miraculous what they are able to do in these intricate surgeries! I feel this has helped me better understand the process, should flaps be in the mix of possible procedures the doctor recommends on Monday. I'll keep you all posted!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
#196424 - 05/12/18 09:16 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117
NYC
I haven’t given up lol. I’ll try to email it! I was thinking it couid be something else too. It happened to me a few yeass ago for a recurrence with procedures I never heard of before.

All the best!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196446 - 05/16/18 04:55 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Hello Again Friends,
I thought I would update anyone interested on this continuing recurrence journey. The biopsy of the maxillary area (previously resected and radiated) was positive for SCC. The MRI did not show the tumor, but that's usual for me as all my tumors have been so small they are not easy to detect on scans. (A good reminder to all of us that biopsy is the only definitive mode of diagnosis!) I will have a full body PET tomorrow and further discussion with the surgical oncologist about the options he's and the tumor board are proposing. The good news, no flaps in the conversation. The not so good news is that they would have to resect about half of the upper palate because of margin issues and the prior radiation, and thus, healing issues. I'll know more tomorrow night, but my questions for you all are:
1) How has the quality of life been for those of you with parts of your palate removed and the need for a resulting obturator? I have had a prosthesis for 7 years, since my first surgery removed the the section of the upper jaw so I'm used to that, but this would definitely involve going into the maxillary sinus. I don't care as much about the eating issues as that is already compromised, but more about communication.
2) I will be meeting with the medical oncologist about clinical trials at Stanford, but do any of you know of any or experimental treatments going on elsewhere in the country, that might be interesting to look into? I've been researching different cancer centers, but I'm one of those 7% that are more unusual, and thus, harder to find others with my situation.

Thank you to anyone who wants to chime in here. I know none of us are doctors, but there's a wealth of experience on this board and I would love to hear from you! Thank you do much!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
#196474 - 05/22/18 04:47 PM Re: Possible New Recurrence [Re: Teacher Karen]  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Hello Friends!
I just posted a new thread in the Forum for Eating, Speech, Swallowing Issues. Since my recurrence as been confirmed and my surgery date set, I would appreciate any information and personal experience you all have with adjusting to obturators related to speech and eating. Thanks!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
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