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Joined: Oct 2015
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lmi121 Offline OP
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Joined: Oct 2015
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Hi Everyone,

My father is a stage 4 base of the tongue survivor. I am here looking for ways to help him cope with his extensive radiation damage.

He has been living on a peg tube since 6/12, and has suffered with aspiration pneumonia 3x in the past 2 years even WITH the peg tube. Most recently in the past month his peg tube has come out 2x. He is NOT senile or suffering from dementia the tube is just coming out. It appears that many doctors are just not educated enough on peg tubes and freeze when seeing one.

If anyone can offer any advice or tips that would be greatly appreciated. As many of us know the peg tube is his lifeline.



Father is a stage 4 base of the tongue cancer survivor
Diagnosed 1/09
Lives on Peg Tube since 6/12
Joined: Jun 2007
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Welcome to OCF. You have come to the right place for info and support.

Ive had a feeding tube for several years so I have experience with anything and everything that can go wrong with them. There are a few different types of feeding tubes. Maybe your father would do better with the Mickey button? This type doesnt have the long tube and is just the little cap right on his skin. This type seems to hold up much better than the regular PEG tube.



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
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Hi. My husband used gentle tape to keep it secured to his stomach when not using. It never fell out. He was very carefull and not very active while that thing was in his stomach. Hoping your father finds a solution. Ps my husband even had it shortened to keep better control over it.


Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
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You did not mention if your dad is drinking and using the PEG only for food, or if he is using the PEG for both eating and drinking. The aspiration pneumonia could be from the liquids he drinks, or even from his saliva. Has your dad had a swallowing test? A speech and language pathologist who administers the test can advise you on the correct thickness of the fluids your dad may be drinking. Aspiration pneumonia is dangerous, especially when it is silent aspiration. While you are pursuing a solution for the PEG, I would suggest talking to the doctors about the aspiration pneumonia.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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