| | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | You should get the Mic-Key. You will be amazed at the freedom and ability to just about everything without the tube in the way. You can even slap some tegaderm over it and go swimming.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | jneal.... Its smart to hang onto your feeding tube until you can go for 2 months sustaining yourself without using it. Recovery is full of ups and downs with many setbacks coming unexpectedly. I know how lousy it is having that darn tube. A couple weeks longer in the whole scheme of things isnt a big deal. Always better to be safe than sorry. Most docs wouldnt bother to switch the average short term peg user over to the Mickey button. I remember when Charm went back and forth with his doc about making the changeover. Of course, he finally prevailed and got one. Thats the Charm we all know and love.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | I had a simple solution, I just secured it in the elastic band of my shorts. I tried surgical sleeves, tape, even a lanyard with a clip, the shorts or pants waist band was the best for me
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!
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Hi Steve - sounds worth a try. Thanks!
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 2012 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | I just wore an size or 2 smaller tee-shirt.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Aug 2013 Posts: 21 Member | | Member
Joined: Aug 2013 Posts: 21 | [quote=ChristineB]jneal.... Its smart to hang onto your feeding tube until you can go for 2 months sustaining yourself without using it. Recovery is full of ups and downs with many setbacks coming unexpectedly. I know how lousy it is having that darn tube. A couple weeks longer in the whole scheme of things isnt a big deal. Always better to be safe than sorry. [/quote]
Thanks Christine, I know you're right but I'm impatient to getting back to doing more active things with my kids. I do tape the tube down, but I'm skinny and there's no fat to cushion the site so by 'flopping around' I meant any movement of the tube between the 'exit' point and the taped down end hurts, plus wearing tight clothes just kind of bends it at the site and that hurts; the only position that doesn't hurt is when the tube is perpendicular to the surface. I've had it since September and it doesn't seem to be getting any better. I'm telling myself that I'll have them take it out, and if I can't keep up the 3K calories a day or God-forbid something else goes south then I'll have them put a mic-key in.
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
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | An idea for women ... I secured my PEG tube by wearing a camisole with a built in bra, then stuck the feeding tube up under the elastic. It was very easy.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | 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 | Before Kris's PEG was changed to a Mickey, I just used to attach a piece of firm Elastoplast tape to the top of the dangling part and then Kris just used a safety pin to attach it to his T shirt or singlet. Worked very well.
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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | You should support the peg tub. Having it pull down cause irritation. I used a rubber band and a binder clip for papers. I just looped the hose on rubber band and to the clip. Then use the clip on my under shirt. The rubber band allows it to stregh and move easily. Works well easy to remove.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Aug 2013 Posts: 21 Member | | Member
Joined: Aug 2013 Posts: 21 | [quote=Hockeydad]You should support the peg tub. Having it pull down cause irritation. I used a rubber band and a binder clip for papers. I just looped the hose on rubber band and to the clip. Then use the clip on my under shirt. The rubber band allows it to stregh and move easily. Works well easy to remove. [/quote]
I'll give this a try, thanks. Lots of credibility from a fellow hockey dad...
Last edited by jneal3; 02-18-2014 11:43 AM.
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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