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

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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]  
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Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Posts: 9,625
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
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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: 9,625
ChristineB Offline
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ChristineB  Offline
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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
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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
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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.
#148936 - 05/01/12 06:09 PM Re: Feeding Tubes [Re: Maria]  
Joined: Apr 2012
Posts: 60
itsoktoday Offline
Supporting Member (50+ posts)
itsoktoday  Offline
Supporting Member (50+ posts)

Joined: Apr 2012
Posts: 60
California
Everyone,
Thank you for all the helpful tips. Do any of you have problems with reflux or asperation? They want to put my tube in my small intestine. I just found that out.


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.
#148937 - 05/01/12 06:10 PM Re: Feeding Tubes [Re: Charm2017]  
Joined: Apr 2012
Posts: 60
itsoktoday Offline
Supporting Member (50+ posts)
itsoktoday  Offline
Supporting Member (50+ posts)

Joined: Apr 2012
Posts: 60
California
Hi Charm,
What do you mean again by a button tube? Never heard of it. I shall do some research on that.
Thanks


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.
#148939 - 05/01/12 06:41 PM Re: Feeding Tubes [Re: itsoktoday]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi there again... to the people talking about formula's etc. Is it not possible to make healthy blended food on your own? I know it's a lot of prep work but ultimately from a health stand point you would be eating food that's prepared fresh by you and gives you more control... there is a website for tube feeders that offers nutritious options with no additives and chemicals.

As for you - Itsokay.... Mine was placed in my small intestine during treatment... the bad thing about that is you are then stuck on a formula feed I think... since - i was told by a dietician that you have to have a special type of feed for that as it has to be predigested? Of course there are probably many different brands, but I would ask. good luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#148942 - 05/01/12 07:07 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

Regular G or J tubes have a long tube dangling out the front.
Buttons or skin level devices do not.
I did not realize that you were talking about a J or Jejunum tube. Those tubes go into the small intestine.
J tubes require a special type of "button". Here is a link to one woman's J button story J button
Here is a link to pictures of the two most popular G or gastronomy"buttons". They go directly into the stomach Mickey vs AMT button

As you can see, the J button has a tube on the inside since the intestine does not have the storage of the stomach. The G button has no tube. Both use a balloon to hold it in.

There are also combo J and G tubes. J tubes almost always require very slow feed drip with a pump. You need a tube first to let the stoma heal properly before you can get a button
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
#148950 - 05/01/12 09:44 PM Re: Feeding Tubes [Re: Charm2017]  
Joined: Jun 2007
Posts: 9,625
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)

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Posts: 9,625
PA
I have a J/G tube which has a port for the stomach and another one for my large intestine. I usually use the smaller one (stomach) for meds and the larger one for the feeding formula. The J/G tubes are great but they do wear out quickly. That is a huge disadvantage of them, having to go every 2 or 3 months for a new one. Its done on an outpatient basis where you are awake for the whole thing. It can be uncomfortable, but it is fast. I usually walk out of there with a brand new one about 25 minutes after I walk into the hospital.

Good luck!!!


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
#149029 - 05/03/12 03:50 PM Re: Feeding Tubes [Re: ChristineB]  
Joined: Feb 2009
Posts: 20
sandisays Offline
Member
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Member

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Posts: 20
missouri
I m not sure what kind of information you are looking for. I've had a tube for three years and will have it for the rest of my life. The last replacement was the newer button type which I like better than the "hanging tube" type. I use Jevity and other than coffee and chicken noodle soup broth thats about it. Most liquids (and I mean thin liquid) doesn't taste good. I just accepted the idea and have learned to live with it, I still go out with family and friends but just order coffee. I have traveled extensively with it. Some things in life just can't be changed, the sooner you accept the idea the better off you are. I have always taken the thought if thats the worse thats going to happen to me I pretty lucky.

#149277 - 05/08/12 06:15 PM Re: Feeding Tubes [Re: sandisays]  
Joined: Apr 2012
Posts: 60
itsoktoday Offline
Supporting Member (50+ posts)
itsoktoday  Offline
Supporting Member (50+ posts)

Joined: Apr 2012
Posts: 60
California
I have not yet had the J tube put in. I am getting a second opinion by doing aonther Barium Swallow Test and Barium Swallow test through the tube I currently have to see if it is truly a swallowing problem versus a reflux problem that is causing my asperations. I did a little test last weekend eating a bit of food and drinking some liquids. I asperated that evening and had a stomach ache and was ill that night and the following day. I just want to check out all my options before I completely give myself up to having a feeding tube the rest of my life.
Robin


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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