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PEG Cap Keeps Popping Open #156177
10-12-2012 06:26 PM
10-12-2012 06:26 PM
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Kerri Offline OP
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Kerri  Offline OP
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Hi, Friends.

I'm about 21 radiation treatments in and things are getting rough.

My PEG was placed about a week ago and I'm still getting used to the the bag and bolus feedings. I'm still an not even closed to my quota of 6 cans per day. Whenever I try to do a feeding more than 6 oz at a time, my PEG cap keeps popping off. I have learned that I must be very careful not to bend forward or squat for a distinct amount on time after I eat, but sometimes it just happens despite being very careful. I have had to tape the cap shut tonight and the thing just keeps getting gummier and gummier due the buildup of adhesive.

This is all very frustrating in that it's supposed to make my life easier and it making things so much harder right now as I cannot feed/medicate myself without help most times. I am taking in very little orally, except sips of water throughout the day.

I'm just looking for any quick tips from anyone before I have the VNA come out to help.

Thanks,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156178
10-12-2012 07:04 PM
10-12-2012 07:04 PM
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Posts: 10,364
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ChristineB Offline
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ChristineB  Offline
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Joined: Jun 2007
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PA
You should have a feeding pump. Ask for it! This way it can run overnight while you sleep.

Something doesnt sound right about the cap popping off by itself.

When you do a feeding you should be sitting up and then stay sitting still for at least a half hour to let your stomach settle. If you arent feeling well from the feedings slow it down and add water. Usually by slowing it down and adding water will do the trick with nausea or a bloated feeling.

Kerri, watch your intake!!!! This is very very important and will make things so much harder if you are skimping on your nutrition and hydration. I dont want to see you wind up being hospitalized fro malnutrition and dehydration. You will feel horrible, please be more careful!!! Your lack of nutrition will catch up with you and will make you very ill. Your body is fighting the effects of treatment and the cancer is burning up calories like crazy so you MUST push yourself to take more in. Can you drink ensure? Are you still taking sips of water?

Wishing you all the best. Hang in there!!!


Christine
SCC 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 smile
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156183
10-12-2012 07:14 PM
10-12-2012 07:14 PM
Joined: Oct 2011
Posts: 805
NY
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KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
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NY
I know it's the last thing you want to hear, but push through it. I promise in a couple months you will be moving on with life and thinking, "that wasn't so bad!" Or at least that it went by quicker than you thought it would.
Hang in there. You MUST get the nutrition, somehow. When do you see a doc again? Please have them check your tube. Something sounds wrong.
Don't forget to try to swallow something too. You don't want to lose that reflex.
So sorry. We understand how much it sucks. We really do.
Kathy


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
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156184
10-12-2012 07:24 PM
10-12-2012 07:24 PM
Joined: Jun 2007
Posts: 10,364
PA
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ChristineB Offline
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ChristineB  Offline
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There are tiny clamps you can get that will clamp the tube closed. These work almost like miniature clothes pins but they look like a C-clamp with a very small screw to use to close the clamp. Im sorry its so hard to describe over the internet. Ask your nurse, she may have one for you or know where it you can get one. I never knew about them until my HBO nurse gave me a couple she had lying around her facility. Maybe in a pharmacy where they have durable medical equipment they would carry something like this.


Christine
SCC 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 smile
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156198
10-13-2012 05:19 AM
10-13-2012 05:19 AM
Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
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davidcpa Offline
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davidcpa  Offline
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Posts: 8,311
Gulfport, Florida
Kerri,

Don't become dependent on the PEG. You really need to continue to swallow every day. Not saying that's easy but you must continue to use those swallowing muscles each and every day.


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.
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156220
10-13-2012 12:30 PM
10-13-2012 12:30 PM
Joined: Feb 2009
Posts: 22
missouri
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sandisays Offline
Member
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Joined: Feb 2009
Posts: 22
missouri
Really it sound like it is defective, believe me that happens. I had no idea there were so many differnet peg tubes. I have given my doctor a list of three that I find acceptable. That doesn't mean one of them couldn't be a lemon but I have had some that are just unacceptable. Talk to your doctor and get a new tube.

Re: PEG Cap Keeps Popping Open [Re: sandisays] #156226
10-13-2012 04:37 PM
10-13-2012 04:37 PM
Joined: Sep 2012
Posts: 16
Highlands of Scotland
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Lynne B Offline
"OCF across the pond"
Lynne B  Offline
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Joined: Sep 2012
Posts: 16
Highlands of Scotland
Hi Kerri,
Sounds like it's defective to me. After I came home from finishing my rad treatment, I was using my peg for o/night feeds and additional fortisip/ensure drinks but the cap and assembly underneath it came off, so I had a minor panic for 5 mins but luckily my son was here and looked in the supply box I'd been sent home with and there was a whole spare part in there that I'd never noticed and together we managed to change it. No problems since with that, so have you got any supplies like this perhaps? My peg line has a clamp on it, hasn't yours?
Anyway, hoping it's sorted for you soon.
Take care
Lynne


BOT dx via Pe/CT combined scan Mar2012
Spread to node-removed.
HPV 16 +
Cisplatin x2, RT x30 June & July 2012.
Peg in situ 06 2012 & 1 tooth out.
Visual scope clear Oct 2012
Veggie, never smoked or drink much (polish halo!), no caregiver. Aged 58, Lynne in Scotland
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156232
10-13-2012 06:22 PM
10-13-2012 06:22 PM
Joined: Aug 2011
Posts: 596
MA
K
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
Kerri  Offline OP
"Above & Beyond" Member (500+ posts)
K

Joined: Aug 2011
Posts: 596
MA
Thanks for all of your input and concern.

My docs gave me a goal of being up to 4 cans by this weekend and 6 cans by the end of next week.

I am sipping water throughout the day, but otherwise unable to tolerate any milk-based foods as they exacerbate the sores on my tongue. I'm making sure that I continue with the water and the swallowing saliva.

Christine, I have taken your advice and slowed down the flow with the bag feedings and added 1-2 cups of water to each feed. I sit mostly upright, in a very slightly reclined position for at least 60 min. I have a hiatus hernia, which makes getting filled up intolerable.

As for the defective equipment/plug, I am going to call the VNA tomorrow to see if they can have someone come out and replace the part or help steer me in the right direction. I may have to call interventional radiology (who put the PEG in) to fix it. I have an appointment with them on Friday in order to remove these special "tacks" the hold the PEG in place. The type of PEG that I have is called the "pig tail". I don't know if that helps anyone.

Thanks so much, my friends. This is getting to be very hard and I have a lot of help, for which I am grateful.

I'm just having a very hard time physically and emotionally right now. Sometimes I feel like this treatment is killing me instead of curing me. I burst into tears this week when my docs said it will be getting a lot harder before treatment ends.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156233
10-13-2012 06:34 PM
10-13-2012 06:34 PM
Joined: Oct 2011
Posts: 805
NY
K
KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
"Above & Beyond" Member (500+ posts)
K

Joined: Oct 2011
Posts: 805
NY
Hang in there Kerri. It will get worse, but sooner than you think you will be on the upswing. Just stay hydrated, get the nutrition, hunker down and hold on! You are doing a great job. Sleep as much as your body wants.
Keep posting. We're here.
Kathy


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
Re: PEG Cap Keeps Popping Open [Re: Kerri] #156239
10-13-2012 08:04 PM
10-13-2012 08:04 PM
Joined: Jan 2009
Posts: 216
Indiana
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CherylR Offline
Gold Member (200+ posts)
CherylR  Offline
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Joined: Jan 2009
Posts: 216
Indiana
Kerri - dh had problems with cap popping open too. be sure to wipe the cap off and the tube off. If the thing is wet from the feeding it will tend to pop easier. And ask the nurse for something that works!!!


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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