#148899 - 04/30/12 01:28 PM
Feeding Tubes
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Supporting Member (50+ posts)
Registered: 04/30/12
Posts: 60
Loc: California
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Living life with a feeding tube.
_________________________
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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#148902 - 04/30/12 02:14 PM
Re: Feeding Tubes
[Re: itsoktoday]
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Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Registered: 09/28/06
Posts: 7404
Loc: Gulfport, Florida
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Not sure what you are expecting with this post?
_________________________
David
Age 58 at Dx, HPV 16+ SCC, T1N2bM0, Stage IV BOT and 2 nodes, non smoker, casual drinker and exercise nut, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), no surgery, no Peg, Tx at Moffitt over 8/28/06. June 2007, back to riding my bike 100 miles a week as if nothing happened.
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#148910 - 04/30/12 03:23 PM
Re: Feeding Tubes
[Re: davidcpa]
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Patient Advocate (1000+ posts)
Registered: 01/02/09
Posts: 1811
Loc: Idaho
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Been there, done it!
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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#148912 - 04/30/12 04:09 PM
Re: Feeding Tubes
[Re: itsoktoday]
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Patient Advocate (old timer, 2000 posts)
Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
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Robin
Hey, that is exactly what I am doing: LIVING LIFE with a permanent feeding tube. I failed 4 MBS tests despite hard studying and therapy including Vitastim,
There are lots of people in the same boat and it's not bad.
Lots of tips and tricks. Definitely ditch that dangling old tube and get a "button" (low profile gastronomy tube) preferably an AMT not a Mic-key (Kimberly Clark) after six weeks.
Plus consider a blenderized diet. Also I am free of the pump (never used one) and just syringe (bolus) everything all the time, including wine.
Post again and let us know how you are doing. Oh, and nice Trifecta of OCF alpha males for replies in your first post
(inside joke if only to me - ) Hope your tube is only temporary
Charm
Edited by Charm2017 (04/30/12 04:11 PM)
Edit Reason: typos
_________________________
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
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#148913 - 04/30/12 05:00 PM
Re: Feeding Tubes
[Re: Charm2017]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6727
Loc: PA
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I use a feeding tube still too. Probably will for life, but you never know. If you need any help with your feeding tube let us know, Im a pro with the feeding tube and formula stuff.
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive 
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#148915 - 04/30/12 05:59 PM
Re: Feeding Tubes
[Re: ChristineB]
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Senior Member (100+ posts)
Registered: 02/04/12
Posts: 123
Loc: MN
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Christine,
I see I am not the only one who calls the canned food "formula". I'm sure it goes back to my 20 plus years running my daycare.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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#148923 - 04/30/12 09:04 PM
Re: Feeding Tubes
[Re: terrib]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6727
Loc: PA
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I call it formula cuz it smells so bad! I cant stand the smell of it. To me I think of baby formula whenever I get a whiff of it. YUCK! But I gotta use it anyway.
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive
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#148928 - 05/01/12 02:43 AM
Re: Feeding Tubes
[Re: ChristineB]
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Senior Member (100+ posts)
Registered: 02/04/12
Posts: 123
Loc: MN
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What kind do you use? My husband was using Isosource 1.5 Cal but after researching I found out it is synthetic, man-made food. Yuck!! Surprising it tastes fine, I could easily drink it, has a nice vanilla taste. Have been trying a new brand that actually is made from meat and vegetables but tastes gross and tastes like the metal can. He was taking 7 of the synthetic at 350 calories so now he needs 10 cans of the other to get the required nutrients.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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#148932 - 05/01/12 05:54 AM
Re: Feeding Tubes
[Re: terrib]
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Patient Advocate (old timer, 2000 posts)
Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
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Terrib
I call it formula also. I've been using Jevity 1.5 but my new medical supply company shipped me one case of IsoSource 1.5 to try out. Comparing the two online indicates that Jevity has more fiber: 22g/L than Iso 8g/L and better fiber: FOS rather than guar gum. But I may mix and match a little as the more different types of fiber the better.
Plus I have "real food" everynight, the same dinner as my wife makes for herself, that I throw into the Vitamix and put down the tube.
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
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#148935 - 05/01/12 08:42 AM
Re: Feeding Tubes
[Re: Charm2017]
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"Above & Beyond" Member (500+ posts)
Registered: 07/15/11
Posts: 708
Loc: Ohio
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If odor is an issue, a dab of Vick's Vapo Rub on the nostrils will help mask it.
_________________________
Caregiver to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 and 3/2012 clear, 1/2013 physical exam clear
On thyroid pills. Getting slightly less sensitive to hot peppers, and can handle sweet hungarian paprika again. Life is good.
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