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#196144 04-14-2018 10:38 AM
Joined: Apr 2018
Posts: 1
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Joined: Apr 2018
Posts: 1
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I am not really brand new here, I was a member 7-9 years ago or so. But as I moved on & was doing well, I faded away, so now I've set up new account. My issues are post radiation & chemo issues. Started last year with dental issues, and had 1 molar extracted only-so not so bad! Other issues are the usual: no saliva, taste compromised, loss & difficulty of hearing, etc,etc. But biggest issue right now is my swallowing. Has gotten so bad, I choke, gag, regurgitate, out through nose; you know-all the GOOD stuff! 11 years out. Had barium video swallow study, which found several issues, including a webbing somewhere down there. Both radiology & speech/swallow therapist wrote reports on results. Then esophagram, which agreed with others. 3rd procedure endoscopy; but that was aborted when he couldn't get scope past a stenosis (stricture?) upper esophagus. So beyond that, nothing could be seen, including the unknown webbing. Back to ENT, who said dilation maybe could be done, but referred me to H&N oncology surgeon. She agreed with the risk of tearing, as seems very fibrotic. She will confer with another colleague and also back to the ENT to decide just what is my best path forward. Brian read my post on another site and reached out to me, since he has had this same personal experience. I am hoping to talk with him today, haven't been feeling very hopeful lately. PS-no idea how to add signature---????
2007 diiagnosis of stg IV squamous cell, unknown primary. Excised 3.1 cm for that diagnosis. Pet found at least 3 other node involvements, all on right side. Cisplatin, could only tolerate 2, with concurrent 35 rads at 70 gys. Modified right neck dissection 3.5 month later. 13 nodes, all clean. NED since then. Thank you!


2007 Stg IV SCC, unknown primary
Excised 3.1 cm for diagnosis. PET found 3+ other node involvements, all on R side. Cisplatin, only tolerate 2 doses, w/ concurrent 35 rads @ 70 gys. Mod R neck dis 3.5 month later. 13 nodes, all clean
NED
Gayle A Johnson #196147 04-14-2018 03:30 PM
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Gayle,

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=190895&page=1

My husband had his esphagus opened up using a new procedure. You can go to the above thread and read about it. John’s esophagus was totally closed due to scarring. The interventional radiologist opened it up using magnets. I don’t know if this is what you are looking for but it’s probably of interest to you. I have to let you know that we are Canadian and the doctor is in Toronto.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Gayle A Johnson #196149 04-14-2018 05:05 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Hi Gayle! Welcome back!!! Im glad you're here but sad thinking you came back due to having a problem. I can add your accounts together very easily so you would have your history of posts/replies and your old friends. Please send me a PM and give me your info about your original account so I can combine your accounts.

Ive also added the info you posted which to me appears to be a signature. Im sending you a PM with a link that will help you get reacquainted with the OCF forum. Over the years we've had many changes.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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