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JoeyA1A #179342 04-15-2014 06:27 AM
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Hated mine, but there was no way I coulda eaten for about 4 weeks with the level of mucositis and excess saliva I achieved. It would have hurt too much and triggered a lot of vomiting....

For me a peg did contribute a small level of discomfort every time my stomach was empty the sucker started moving around. Couldn't sleep longer than four hours.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
ChristineB #182036 05-30-2014 09:45 AM
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I agree the nutrition is made of junk. I just don't have the energy to make my own. I found something on line but it was $8.00 a serving. I pay $8:00 a case. I have had issue with switching so I stay with the same. We can only hope someone will come up with something nutritious and affordable,


Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
JoeyA1A #182177 06-04-2014 06:55 PM
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I have a question my husband has the peg he don't put formula trough this as he is just two weeks in rads) he has one session of chemo around 9or10 days ago he's been trying to figure out different liquids he can eat like some and other foods
He can take the liquid foods down better tolerate ) he seems to get nausea after the tube is flushed with plain water we do this everyday since it was placed in May ! I've give him zofran seems to help some is their anything elese he can take for this also what foods can anyone suggest liquid the whole foods taste like cardboard he says I hate seeing him filling sick thanks for any input we may recieve


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
JoeyA1A #182186 06-05-2014 06:02 AM
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I never had a PEG so I can't help you there but I'm sure you will get tons of help from others but it's advisable not to use the tube until it's absolutely necessary. He needs to swallow normally as much as he can.


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.
JoeyA1A #182263 06-07-2014 01:15 PM
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What are some foods with high calories out their that can be used in the peg? I thought their was a forum on here with foods good to use with a peg just can't find one .... If they're isn't one may I suggest one I have a few options not many that's why I'm asking !! Thanks all


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
JoeyA1A #182265 06-07-2014 07:30 PM
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Sorry but there isnt a list of what foods can go into a feeding tube. As far as I know, a feeding tube is meant to use formulas. There are hundreds of different types available thru prescription and others over the counter like ensure, boost etc. Homemade foods can clog the tube. Plus with homemade foods, its hard to know exactly how many calories and nutrients are being taken in. Im certain homemade formula has to be healthier than the processed, canned formula.


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
JoeyA1A #182267 06-07-2014 09:15 PM
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I had one of those. I would recommend that you stick to formula. Some of the stuff (forget the name it extremely high in calories in a small volume). Being the experimental type, I used a blender, it worked well too�. but every so often I would plug up the tube and make a major mess trying to unplug it using pressure.
Just look at the diameter of the tube and realize that near the end there is an constriction.
If you decide to do this make sure it is finely blended. Others, (Charm, one of my heroes) used the PEG to "imbibe" some wine.


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
JoeyA1A #182272 06-08-2014 04:12 PM
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There is a Blenderized Food for Tubies group on facebook. There is a Blenderized Diet forum on yahoo. There is a forum at foodfortubies.org. It's not very active, but they have recipe ideas. drinkyourmeals.com gives free memberships for tube-fed folks and they have a lot of recipe ideas.

I've been using a blender (Blendtec or Vitamix) for about 5 years now. Yes, clogs happen, but they can be dealt with (I've never needed to go to the doctor just for a clog) and I feel so much better not putting all that sugar and processed food in my tube. Bottomline: blending food is very doable. If you have a tube long-term and there isn't a specific, medical reason you need formula then I think you should try blending your meals. Yes, that's just my opinion and I'm not a doctor or nutritionist but there are quite a few other tubies and parents of children with feeding tubes who feel the same.

Also, I do drink wine through the tube...probably more than I should...


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
JoeyA1A #182276 06-08-2014 08:04 PM
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I fully agree with Brian, I originally wrote under the assumption that you only use the PEG for a couple of months at most, if even that. If you have to use it chronically then this is a totally different issue.


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
JoeyA1A #182291 06-09-2014 08:01 AM
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Thanks Brian I was sure it was doable as I had read this from another site before I will use the links to follow up on some tube food ideas....


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
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