| | Joined: Feb 2011 Posts: 45 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Feb 2011 Posts: 45 | Hi guys, I 've been posting on the recurrence section since this came back twice.
My feeding tube through my nose into my stomach was working but the tape came off my nose and out came the tube. I have a temporary trach but can't swallow enough to eat. Thew nose tube was a pain always in the way. Should I ask them to do the stomach PEG. I will have to get something today if only for a short period of time. I hate to go through another surgical process. Thanks Steve Hurlock
SCC of larynx,2/1/2011 surgery 16 times to remove papilloma on vocal cords,started TOMO rad treatment 4/11.2011 T2N0M0 possible invasion onto cartilage tissue Cancer back 6/2012. Polyp removed Came back spindle cell carcenoma 6/22/12
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Steve
Long time OCF readers may be surprised at my answer here, but yes,if you are going to need a feeding tube and cannot swallow enough for nutrition, I found the PEG to be easier to deal with than the nasal tube. BTW, I have had a nasal tube, a PEG, and now a button so as far as G tubes go, I've had them all. When I had my temporary trach, the nasal tube interfered with my spitting up the mucous or more accurately coughing/blowing it out the trach hole/stoma.
But if you end up with the tube longer than 6 months, switch to a button. It's not really "surgery" to put in a PEG although the hospitals and doctors bill the insurance company that way. Think of it more like a stomach piercing.
Hope you ditch all tubes soon
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: Feb 2011 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Feb 2011 Posts: 45 | Charm exactly...I found myself spitting more on the tube then container Thanks for quick reply Steve Hurlock
SCC of larynx,2/1/2011 surgery 16 times to remove papilloma on vocal cords,started TOMO rad treatment 4/11.2011 T2N0M0 possible invasion onto cartilage tissue Cancer back 6/2012. Polyp removed Came back spindle cell carcenoma 6/22/12
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I found the nasal tube to work for me BUT I only needed it for 2 weeks and I didn't have a trach. Funny I rolled over on my tube my first night with it in and it got caught and pulled out and I awoke to a wet bed.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Steve, I would also advise you to get the PEG. It is important that you keep your nutrition going and realistically , you are not yet ready to eat the normal way. A PEG will do the job easily. And without fuss.
What do your docs advise?
Hope things are improving for you,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I think you would be much happier with the PEG. Go for it!!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Go for the tube. You get used to it in no time.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Charm... what is a Button??
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) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | EZJim We "tubies" have our own specialized vocabulary just like OCF's members. The PEG most OCF members get is simply a long tube that goes into the stomach with about six to nine inches hanging outside like a swinging cat's tail. The medical name for the long tube is a gastronomy tube. The "button" is a nickname for a low profile gastronomy tube. However you usually need to first get the long tube so the stoma (the hole in your stomach that the tube goes through)stablizes and then get its exact measurement. For example, my button is 3.5 cm long. As far as inserting the button, it is even easier than the long tube since the button can only fit in one way: the correct way. Unlike the long tube, the button cannot be pushed into the stomach too far or too short. In fact, the button is so easy to change, that now my wife can do it. The button does have a special valve in it that the tube does not, an anti reflux valve that you need to hook up an extension to that lets you pour your feeds into it since the button lies right next to your skin. But with the valve, the button can never accidentally leak like the long tube does if the clamp comes open. Here is a link to a picture of my AMT mini one button AMT button It gets more complicated if you need a J tube (goes to the jejunum - the section of the small intestine between the duodenum and the ileum) in addition to a G tube like Christine does, although AMT makes J/G buttons also. Thanks for bringing this up. In the future I will use button (low profile gastronomy tube). Charm
Last edited by Charm2017; 07-12-2012 02:50 PM. Reason: typos
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: 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 | Thanks for the info, Charm! I just had my J/G tube replaced again today. How I hate having that done!!! Anyway, I specifically asked about if there was such a thing as a J/G button and was told no. The nurses said they usually only see the button used with children and they parents usually bring the button in to have it replaced. I referenced you and said that your wife changes your after the doc taught her how and they said yes that can be done. Of course we already knew that! Wonder why they told me there was no such thing as a J/G button. Guess it wouldnt be able to be changed at home since the 2 tubes go to different places.
PS...Didnt mean to hijack the thread. Im discussing alternate feedings tubes and the differences between them.
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  | | |
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