#3604 09-07-2004 09:03 AM | Joined: Jul 2004 Posts: 16 Member | OP  Member
Joined: Jul 2004 Posts: 16 | hi all sorry i have not been on lately i got my prothesis palatal drop and i also got a lower prothesis to take up the space between my tongue and front lower teeth to try and take care of my druel problem but it is still there i still druel my mouth all most can fill up with druel when iam just sitting here typing does anybody know if there is anything i can do about this meds etc also i finally got rid of that dam peg tube what a relief but even when i had it in and now that i have it out i still get a queasy stomach off and on i actually threw up about a week ago i have been on ensure for 5 months my girlfriend called the dietician and she said she's never heard of ensure doing that to someone does anyone have any experience or thoughts on this any info would be helpful thank you
your friend cowie
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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#3605 09-07-2004 10:04 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 Posts: 251 | Hi,
My husband had alot of trouble with nausea when he used Ensure in the Peg or tried to drink it. He found that he could handle Boost better (Boost Plus has more calories). Everyone is different, but it might be worth experimenting with some different products. Another one that he tolerated well adn that had tons of calories was Novasource - you can't get that at the grocery or drug store, you have to order from a special catalogue (as far as I know). Good luck in your recovery.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#3606 09-07-2004 10:19 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Cowie,
I puked with Ensure - I puked with Boost. It was the highlight of my life to donate that sh*t to an old peoples home! I got by with Carnation Instant Breakfast.
For those of you who can tolerate it- all the more power to you. For me it only adds to the lyrics in the Who song "My Generation" "I hope I die before I get old" ;-)
By the druel is actually spelt drool.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#3607 09-07-2004 10:53 AM | Joined: Sep 2003 Posts: 153 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 153 | hi folks,
sorry to hear that some folks have problems with common foods for pegs.
i had a peg and used Boost plus (8 cans/day) for about a 18 months. altogether i used 100 cases of 24. my weight remained essentially constant during that period and i was amazed that i could live on the stuff. to be sure, i was very glad that i did not have to drink it!
these products can be effective, but if you need something else.... get something else. nutrition is a big part of the treatment process as our bodies need food to build new healthy cells.
i have also had what seems like tons of ice cream. i still eat lots of ice cream.
cu,
larryb | | |
#3608 09-07-2004 11:35 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Once more the good old DRINK recipe
1-tablespoon Carnation powder
1 -tablespoon Ovaltine
1 pack Carnation instant breakfast
1/2 cup whole milk
1/2 cup half n Half
2 cups ice cream
1350 calories
Godd Luck Cowie
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#3609 09-07-2004 12:07 PM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 Posts: 251 | Note to Gary:
I like the "druel" spelling. It resembles the word "duel" and that does a pretty good job of describing the recovery process.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#3610 09-07-2004 12:08 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | With regard to the drooling, this may be your body's reaction to the prosthesis, and should subside when you have had it for a while. A friend was prescribed an appliance to wear at night to keep her from grinding her teeth, and she gave it up, after only a couple of nights, because of the extreme amount of saliva it caused. So, there may be light at the end of this tunnel. | | |
#3611 09-07-2004 01:16 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | It works for me!
PS I meant "spelled" not "spelt" Thank you Joanna for pointing that out to me.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#3612 09-07-2004 03:39 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | All this talk of druel has me drooling!  Spelt is OK Gary (I checked) especially in the Queens english, so Helen Aussieh and Tizz and others can relate!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#3613 09-07-2004 04:09 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Cowie, I think these dieticians either are not listening or are not paying attention! I told mine the same thing & they just shrugged their shoulders. I also was one who couldn't take liquid food supplements very well! I hated that crap! I tried Ensure, Isosource & Boost! They all made me queezy! Maybe it was mental! I demanded the peg tube out 2 weeks after radiation ended! I drank chocolate Carnation Instant Breakfast with every meal to wash each bite down & for the extra nutrition. Worked for me! I do remember the feeling of freedom when I too donated 12 cases of Isosource to the old folks home!!! Just keep trying till you find something that works. Mild chili w/beans goes down pretty well if you chew it thoroughly & wash it down with the instant breakfast. Lots of calories & good nutrition!!
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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