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#148899 - 04/30/12 08:28 PM Feeding Tubes  
Joined: Apr 2012
Posts: 60
itsoktoday Offline
Supporting Member (50+ posts)
itsoktoday  Offline
Supporting Member (50+ posts)

Joined: Apr 2012
Posts: 60
California
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.
#148902 - 04/30/12 09:14 PM Re: Feeding Tubes [Re: itsoktoday]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Not sure what you are expecting with this post?


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.
#148910 - 04/30/12 10:23 PM Re: Feeding Tubes [Re: davidcpa]  
Joined: Jan 2009
Posts: 1,844
EricS Offline
Patient Advocate (1000+ posts)
EricS  Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Idaho
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.
#148912 - 04/30/12 11:09 PM Re: Feeding Tubes [Re: itsoktoday]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
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

Last edited by Charm2017; 04/30/12 11:11 PM. 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
#148913 - 05/01/12 12:00 AM Re: Feeding Tubes [Re: Charm2017]  
Joined: Jun 2007
Posts: 9,750
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,750
PA
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.



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
#148915 - 05/01/12 12:59 AM Re: Feeding Tubes [Re: ChristineB]  
Joined: Feb 2012
Posts: 151
terrib Offline
Senior Member (100+ posts)
terrib  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 151
MN
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.
#148923 - 05/01/12 04:04 AM Re: Feeding Tubes [Re: terrib]  
Joined: Jun 2007
Posts: 9,750
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,750
PA
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.


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
#148928 - 05/01/12 09:43 AM Re: Feeding Tubes [Re: ChristineB]  
Joined: Feb 2012
Posts: 151
terrib Offline
Senior Member (100+ posts)
terrib  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 151
MN
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.
#148932 - 05/01/12 12:54 PM Re: Feeding Tubes [Re: terrib]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
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
#148935 - 05/01/12 03:42 PM Re: Feeding Tubes [Re: Charm2017]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Ohio
If odor is an issue, a dab of Vick's Vapo Rub on the nostrils will help mask it.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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