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#119401 07-14-2010 05:34 PM
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ESikon Offline OP
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I literally just [past the one year mark with this g tube and I have a small hole in it. Is there anything I can do, or does it mean it would have to be exchanged? I will put a call in to MD Anderson tomorrow......such a bummer!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #119405 07-14-2010 05:44 PM
Joined: Mar 2008
Posts: 3,082
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WOW -one year on the same G tube. I'm on my fourth one in one year. Unfortunately if the leak is in the main G tube, yes, you need it replaced. In the meantime, regular black electrical tape will work very well to staunch the leak until you get it replaced (at least it did for me)
My CCC now has me on a four month replacement cycle for my G tube - of course I give it a workout with my Vitamix feedings.
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
Charm2017 #119408 07-14-2010 05:52 PM
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WOW Charm every 4 months!

Yes, its on the main tube, near the the connector. I feared it would eventually happen but hoping it would last until I could wean myself off the feedings and supplement with food without losing anymore weight like the doctors want. I just started doing this today!! I took one can away from my morning feed but then at lunch I threw up my "real" food and then at dinner I noticed my pants were wet, from the small hole. I'm wondering what in the world this all means, happening in one today like that!LOL


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #119410 07-14-2010 06:10 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Elizabeth, I have a G/J tube. My last one only lasted 7 weeks. Seems some are made better than others. Mine seem to usually last 3 or 4 months before it springs a leak.

Ive tried unsuccessfully several ways to patch it. The best way is with tegaderm tape. Its clear and tricky to handle but it will seal it for a couple days. Crazy glue and nail glue do not work.

Getting the g tube changed is a very simple procedure. It takes a whole 15 minutes for me to get checked in and have it swapped out. Im wimpy and always ask for lidocain to get numbed before the doc does his procedure. Good thing you have a g tube instead of the peg tube, that would require real surgery to have it changed.

Good luck tomorrow!


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
ChristineB #119412 07-14-2010 06:32 PM
Joined: Jun 2009
Posts: 440
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I put in an email to my nutrionist and will call the dr in the morning. UGH, I have a feeling they are going to want to put the mic-key in me this time. I wish I weighed more so I could afford to lose the weight when the tube comes out.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #119413 07-14-2010 06:37 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Mickey? Is that the one that is flat against the skin?

Add some extra hi calorie stuff to your tube feeds. Try some of the Carnation VHC. I add a can of that to my regular formula, add a can of water too cuz its thick. It is 560 calories per can. You need to bulk up some so you dont have to worry about losing a couple pounds. Come on!!! You can do it smile


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
ChristineB #119418 07-14-2010 07:07 PM
Joined: Jun 2009
Posts: 440
ESikon Offline OP
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That's the one Christine! It would be better for me because of the lil one, she pulls on me all the time and she's even pulled hard enough that the stitches that once held my tube in place came out.
I want this tube out so much but reality sets in and I dont get enough as I think I get, I just think I'm eating alot because it takes me forever to eat!LOL I bought some weight gainer powder top add to my shakes as well. I'll have to look into the carnation.

Thanks for the encouragment!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #119422 07-14-2010 07:39 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Elizabeth, if you want to try Carnation VHC, I would be glad to send you a couple cans. Im sure it would work but sometimes people want to test it out first. Let me know if you want me to share a few with you.

I always order it thru the Amazon link here so OCF gets a small donation with my orders. That works for everything you would buy from Amazon, not just OC related things.

Its alot of work maintaining my weight so I do understand what you are going thru. Sometimes I think I can be without my tube too but then reality sets in and I remember I cant swallow pills or eat meat. Nobody can survive on jello, soup broth and pudding (thats my diet). Push yourself everyday to add a few hundred calories more to your diet. Make a routine like when the kids go to bed then its time for you to push more calories.

Good luck with swapping your tube for a new one smile


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
ChristineB #119427 07-14-2010 07:56 PM
Joined: Jun 2009
Posts: 440
ESikon Offline OP
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Posts: 440
Drinking a shake right now. Just finished a small bagel with a buttload of cream cheese on it!LOL I am eating a pretty normal diet so I feel very blessed, just a few months ago, I was on a diet similar to yours. I will keep adding more calories but in the meantime, I would be so interested in tryong out the Carnation. I'll PM you my address.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk

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