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Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
very disappointing could not even get down a quarter teaspoon Next stop PEG -time to reread the rosy glowing depiction on the OCF board-
I explained to the speech therapist that this tears it, once he PEG is in, that"s the last time I am setting foot in this CCC. Too many bad memories. Tme for nice new convienent clean hospital minutes from my home with free parking and on time appointments instead of extortionate parking fees, dingy facilities, hour long delays the norm, amd overcrowded waiting rooms of georgetown CCC with the horrendous Washinton DC traffic jams coming and going
Luckily, they acknowledged that the swallowing therapies are pretty uniform and that what I do on my own at home will count the most.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2007
Posts: 681
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Nov 2007
Posts: 681
Wow - you need to go kick a wall or something. What a depresing place. I hope that another facility will be better for you. You certainly don't need all the other agravation on top of the medical problems. Some of my worst hospital experiences over the years were not from fear or pain but from upsetting conditions and ineptitude of personnel.
Good luck with the swallowing. Perhaps the test was given too soon and you need time to heal and retrain swallowing muscles.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
I have had barium a few times and most recently when they were checking the anneurysm. Why can't you swallow it? Does it have to go thru the tube? I never had a tuvbe and don't have any idea of the problems with one. I know I never had to hurry drinking the stuff as long as I got it down.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
the test was to see if my new flap was able to move the barium down the esophagus. I "swallow" with a satisfying gulp but nothing goes anywhere, Actually I now really like the texture of barium since i have zero taste after hthe radiation fried my buds. At the Pet scans the techs were amazed how I would just chug the while bottle down and go "hmn tasty" they would allote an hour to drink it and I;d be done within 5 minutes. I would get moved in right ahad of earlier patients who were having great difficulty forcing doen the required bottle. the barium swallow test is the standard to assess swallowing ability



65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
Charm,

The PEG won't be that bad. At least you are aware of the things that you should do to make sure that you can swallow again soon from being here. It will also allow you to keep up with your nutrition so that you have the energy to do the therapy required to swallow again.

I could barely swallow water when they first allowed me to try anything. Today I had three small, mushed up and soaked with syrup bites of a pancake at therapy and it was the BEST pancake that I every tasted. I was not given the barium test, but I understand that it is part of the esophogram scheduled for Monday.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace

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