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Joined: Jun 2007
Posts: 214
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Jun 2007
Posts: 214
For me, the PEG tube was the hardest part of my treatment.The only time I had to take narcotics was the week after the tube was placed. I complained somewhat about it, bacause it did hurt alot. They loosened it after a week, but I always had some degree of discomfort. It also caused acid reflux and loss of appetite. I was determined to get that thing yanked as soon as possible. When I went for a check up two weeks post-treatment I even considered putting fishing weights in my pocket to appear as if I had gained weight and so they would remove the tube. In the end I did not use the fishing weights but I did get weighed with my cowboy boots ON! LOL


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
Joined: Nov 2005
Posts: 1,128
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Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
Hmm, my "yank" hurt only about as much as removing a bandaid from a hairy leg, bled a small amount and healed quickly. I wasn't warned about carbonated drinks, but I didn't drink any; even if I'd had the urge, I was aware there was a hole healing in my stomach, so likely I wouldn't have, but you never know.

I now have the second belly button (both Innies) and also regard it as a badge of honor of sorts.

Towards the end of my use of it, I realized I could push it in or pull it out a little for better flow through it (There's a stopper on the end of it so it won't fall out; the stopper is obviously effective, because when he yanked on the tube, the grommet came out with the tube because the stopper was there.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Jun 2007
Posts: 214
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Gold Member (200+ posts)

Joined: Jun 2007
Posts: 214
I am putting Mederma on my "dimple". We'll see what happens.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
Joined: Mar 2006
Posts: 114
Senior Member (100+ posts)
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Joined: Mar 2006
Posts: 114
I had mine taken out in November. Felt like they were ripping my insides out with it!! I have a significant little scar there (my kids call it my second belly button). But my doc just had me keep it clean and covered. I didn't have any problems with infection or anything. In fact I traveled internationally three days after having it removed and had no trouble....

best of luck


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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