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Joined: Oct 2010
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Una Offline OP
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Hi I had squama cell cancer on my tonsil and received chemotherapy and radiotherapy. I am a year and 3 months on peg tube. I have upper oesophical stenosis and am only able to swallow a trickle of water. My oesophagus was unable to be dilated because it has gone so narrow after treatment and I was unable to swallow barium for barium swwallow.I am wondering if there anybody with a similar problem or someone who could offer advice?
Thanks

Last edited by Una; 10-21-2010 08:20 AM.
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I have been on a feeding tube almost 2 years and will probably be on it for the rest of my life. I can swallow small sips of 7up and chicken noodle soup without the noodles. Most things taste bad to me anyway so these two things give me both sweet and salty tastes. I truly miss cooking but I am use to it now and have accepted it as a way of life. Sorry I don't have better advise for you.

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been on peg fulltime for 20months , i struggle just taking a few sips of coffee oral owing to excess saliva but havent been trying very often (naughty me ) speech therapist gave me some baby food to try early on but it was to gritty and took more time to rinse out than what i managed to swallow .
on the down side is realising how many food ads are on tv these days , on the plus side my "food" shopping bill is only $11 a month .


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
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Una Offline OP
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Thanks so much for your reply. Its a tough road. Did your Doctors ever give you hope that your swallow will come back?

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Una Offline OP
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Thanks for your reply. I just take sips of water. I still have mucus but not as much. Did your Doctors ever give you hope your swallow will come back?

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Hi-I am three years out still have my peg and am starting to eat. I drink a cup of coffee and a cup of hawaiian punch every morning and sometimes oatmeal. I use a large spoon and eat/drink standing up so I can tilt my head back. My lower teeth were removed so I can't chew but I am starting to try different things. Good luck.
Patty 100

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Hi Una - real sorry to hear about your situation. I am 2.5 years with a PEG and no food. My doctor was less than optimistic about me being able to swallow. I found Vital Stim therapy at a local therapy facility. The therapists have helped me be able to drink thin liquids again. They use the Vital Stim machine, myofacial release/massage, and the standard and non-standard exercises. I am not optimistic about real food but being able to drink has helped me start exercising again. Let me know if you would like more details.
mark


11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
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Una Offline OP
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Thanks so much. I will look into it. I hope it is going well for you

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Una Offline OP
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Thanks. It would be great to be even able to swallow liquids. Good luck to you too

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"OCF Kiwi Down Under"
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my dr more or less left the ball in my court as to if i want to or not, been waiting for the dietician since my last dr appt (and thats now over 3 months !!) to see what she suggests i try. have no teeth now and dont want to try anything likely to react and make my bathroom calls of a "kablam" variety so to speak.


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011

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