| | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | On my first go-round, I never really found a satisfactory method of securing the PEG tube to keep it from flopping around. I ended up hanging it from a shoelace tied around my neck, but this was not great and it irritated my neck after while, especially as I got into my radiation treatments.
For night, I made a band to go around my torso by cutting the sleeves and neck off of a ladies spandex top to make an elastic tube. This worked OK, but tended to slip down.
I expect to have the PEG tube in longer this time than the first time around. I welcome suggestions on keeping it secure and comfortable.
Thanks!
Roger
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | I bought two of these and they were great. Comfortable and took care of the tube http://www.exmed.net/p-2003-nu-hope-carefix-fabric-ostomyurology-pouch-support.aspx?Defaul tVariantID=20711 Positive thoughts and prayers "T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Thank you T, that looks dynamite! And, the price is very reasonable. I'll have to give them a try!
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | 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 | Great idea!!!
When I had my peg tube switched to a J/G tube I was given one of these.
Another option is the pregnancy bands women use to help support their tummies. A ladies tube top would also work.
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Something similar is a tubular mesh bandage, made of stretch fiber, which comes in rolls to be cut with a scissor to your specifications, pulled over head to stomach to secure ovet the tube, used once, more, washed or thrown out. This is what my hospital used.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Thanks Paul, another good idea!
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | I just got my tube this week and decided tape was going to drive me crazy. It was the ONLY option suggested by the home nurse. Argh.
I cut a band off one of my husband's old undershirts I was saving for rags, and am using a ponytail holder to take up the slack. Cheap and comfortable for this early post-op time.
I can't wait to see some of those other options.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | Hi all, Check this out: www.mic-key.com/stories/meet-joey-schwartz.aspxMy husband has had this for about 3 1/2 years (hasn't swallowed since his surgery) and would never switch. | | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Hi KristenS,
That sounds very workable, and cheap too!
Roger
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Aug 2013 Posts: 21 Member | | Member
Joined: Aug 2013 Posts: 21 | This mic-key looks pretty amazing, my main motivation to getting rid of my PEG tube comes from how much the damn thing flops all over the place and hurts when I try to exercise, this looks like it would completely solve the problem. I'm pushing the docs to take it out but am nervous about taking it out before I'm able to consistently swallow 8 cans of Ensure every single day. This solution would allow me to be 'patient'....thanks for posting it.
Joe
SCC BOT T3N0 Aged 36 (1999)
Unknown HPV status (before they knew)
SWOG Protocol - 2 rounds chemo, 6 weeks radiation
Recurrence Age 50 (2013) - same site
SCCa BOT T2N0M0
HPV negative
60% Glossectomy/Free Flap from Latissimus Dorsi Recon,
Neck Dissection + 6wks Rad Tx
Non-tobacco user
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