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Joined: Aug 2006
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DebTx Offline OP
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I'm sitting in the Interventional Radiology waiting room hoping this tube will make him more comfortable. He so misses eating and is tired of swallowing those cans of high calorie supplements - everything, he says, tastes bad.

Have many of you had a tube put in? Did you manage to learn to use it well? People we've met here at MD Anderson seem to think it's "fabulous" to get the tube!

I hope he's happy with it! At least he's happy that we're 4 weeks done with Rad Tx - only 2 more weeks to go!

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Debra,
I had my feeding tube put in at MD Anderson and my PEG was truly my best friend when I needed it. Although I was completely dependent on it for nutrition for a good while, it was no problem using the tube. I would just hang up the bag at home while I read the paper at the breakfast table or watched TV in my easy chair, and let it fill me up. Then I began going back to the office and I kept a feeding tube in the refrigerator and hung it on a nail and "ate" while I was at my desk. As I write this I still see that nail above me.
Some of us like myself and Brian Hill had the PEG for several months even after the treatments were over. Other people get back to eating more quickly...you never know...plus, I had conventional radiation and chemo, not IMRT. With the PEG under my clothes I took walks, went to work, eventually played golf and even worked out. It was not very intrusive for me and I got used to sleeping on one side.

As I got back to eating, I slowly weaned myself from the tube. I also found it very useful for medication as well when it was too difficult to swallow a pill: I would dissolve a couple of Vicodin in water and shoot it right into the tube with no problem.

Best of luck.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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It took me a little while (2 weeks) to really get the hang of using the peg, but once I did I found it very easy to use. I had to use a pump at first because my stomach couldn't tolerate much at one time, but after a week of that, I could do the gravity feeds. I have been doing that now for 1 month and I am two weeks out of treatment on Wednesday. I suspect I will have it for 2 more weeks and then it will be gone. It is very useful, expecially as Danny said to use with pain medication. Just make sure not to crush any tablets that are time-release for the tube, since they won't work the way they are supposed to.

Good luck,
Sarah


DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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Hi, Debra, my husband is on his 2nd peg within a year. His total nutrition and meds go thru the peg because he can't swallow. He has managed to gain almost 14 ls. in the last 30 days strictly by peg nutrition. Learning what works and doesn't is trial and error but you all will get there. Ask questons when you need to. Stay strong. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Hi Debra,

PEG saved my life. It is easy to use. I even played golf and lifted weights with mine. No one knew it was there unless I mentioned it to them. I had to take everything through mine for 4 months. Wan't sorry to see it go, but was glad i had it.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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DebTx Offline OP
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Thanks everyone - PEG tube has been in for nearly a week and we're doing well with it.


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