| | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | When I heard that they put the tube in through my throat I relented/they had wanted to put it in prior to treatment. I'm afraid my ego got in the way--wanted to be one of the ones who got by without it.
How sore will I be? Also, how long after treatment is the peg tube removed (provided weight is stable). Can you put just about any blended food in the peg? Will have a "peg tube class" at Hopkins on Fri.
Thanks so much for your support and advice==it means so much to me!!
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sorry to hear you are going to need the tube. If it is a regular peg tube thru your stomach, then the following applies. (not sure what you meant by tube thru my throat) You will be sore for a day or 2 after the surgery. You will want to ask for an automatic feeding pump. You can then do you feedings overnight so it isnt so much to do during the day. You will want to use the prescription formula the nutritionist or gastro doc prescribes. It is balanced nutrition with all the nutrients of food. Dont be upset if you go thru a few kinds before you find the right one. Now you dont have to taste yucky medicine anymore, put it thru the tube  Several pointers..... prop yourself up to eat add water to the formula keep the feed rate slow to start flush before and after feedings flush before and after taking meds use the drain sponges around the peg site, add a dab of antibiotic ointment make sure you swallow at least water everyday still try to eat food daily to keep the chewing and swallowing ability Best of luck with your surgery.
ChristineSCC 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 | | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Hi Christine/thanks for your pointers/don't need to use the tube yet, but will need it down the road (I'm just in my second week). Doc says no swimming or baths? Any way around this?
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I tried to swim a by wrapping Glad press and seal around myself a few times. It was really very comical and allowed me to swim a few times this summer. Every move I made, I crinkled. It held up for me to do a few laps in the pool.
But, yes the docs really frown on swimming. Basically with the tube in, the is a tiny gap which allows pool water to seep inside your belly. Thats why no swimming or baths.
I have since abandoned my swimming cuz I cant get a good seal around my picc line. My nurses have a fit when they change the dressing and its wet from the pool. Ive since abandonded my swimming plans for the rest of the summer.
Even if you arent using the tube yet, you still will want to flush it at least twice a day with at least 60ml of water. When is your surgery? Hope all goes well.
ChristineSCC 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 | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Susan Please let us know what info the "PEG" class gives out. To my dismay, my CCC is totally clueless about using a G tube. Here is a link to a site that has answers to lots and lots of PEG questions. Don't be confused about PEG, G or HEN, they all refer to feeding tubes, a PEG is just a G tube that was inserted using an endoscope down the throat. If you scroll down the lists of topics, there is a specific one on swimming. Feeding tube Tips Blended food will depend on what size tube they put in, ask them at class if you have a 12, 14 or 16 FR (french) size. In feeding tubes, size really does matter, and the bigger the better. charm
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Susan:
Don't worry about the "Tube." It's a precaution in most cases and is a good thing. When needed the tube became my "Best Friend" as it will with anyone who ends up not being able to take in enough nourishment to sustain themselves. It will be removed when you can show you can gain weight on your own again. Don't sweat it!
Best Wishes,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: May 2010 Posts: 6 Member | | Member
Joined: May 2010 Posts: 6 | I had my Peg tube put in the middle of march they say little of no pain, but the reality is that I was sore and tender around the area for at least 10 days. The pain was not overwhelming, but it did hurt any time I used my abdominal muscles.
I have a manual tube, not the pump and have to feed myself 5 cans of nutrient 1.5. Your dietitian will recommend what is appropriate for you.
I didn't really use the tube until I was 2 weeks into my radiation. The changes came fast and furious. For several weeks the feeding tube has been my only source of nourishment.
The peg tube is your friend
Tom Barry
Male 43 Years old Base of Tongue Cancer Stage 4
Diagnosed 01/20/2010
Also have Adult onset Stills disease
08/09/10 Clear PT Scan
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hi Susan,
I was/am a swimer and the docs frowned on me swiming with it. They did say after 8 weeks and the hole was tight it would be OK. By then I was so weak it was out of the question. I did take baths and kept the peg above the waterline.
The Peg was a great thing and even with it I lost 40 pounds. The suggestion of the auto feeded is very good. I was told about it but it went in one ear and out the other!
I had the PEG removed at 3 months post tx. I did get back into the pool/ocean swim. It was great, swiming is a easy exercise to do as you recover, very peacful. Minor trouble with my neck and I had to stop every 2 laps for a swig of water but I do remember how nice it was. Only down sude was that I was so cold! I live in So Cal and swim outside, froze a couple of times.
The pool will be there when you are ready
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
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