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#90561 02-23-2009 02:49 PM
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Hi everyone, I have a friend who is 2/3's the way through 28 radiation treatments and she is pretty messed up. She's trying very hard to eat still and is having a difficult time of it. She doesn't have a feeding tube so is getting all of her nutrition orally. I had a PEG so don't know what to tell her other than ice cream, Ensure and cream of wheat. There are so many things she can't stand the taste of anymore, even vanilla ice cream. She hates the taste of water so they told her to drink as much flat 7-up as she can. Can anyone give me some ideas to give her? Thanks, Carol


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
Buttercup #90562 02-23-2009 03:07 PM
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Get her some Carnation Instant Breakfast VHC. It has 560 calories in the same 8 oz can as Ensure, etc but with 560 calories she won't have to drink as many to get the same calories and believe me less is much better when dealing with the pain. She should try for 3000 cals a day and 48ozs of water or more if her docs suggest. I also did it without the Peg and I'm glad I did but it was tough and the VHC helped me a lot. I drank it for about a year post Tx to supplement my appetite.


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.
davidcpa #90568 02-23-2009 04:35 PM
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Buttercup, Hi-
One of the items I always had in the pantry was Pedialyte
[flavored or non-flavored] found in the "Children's" section of the gro store. This was not for calories, but we used it as a SAFETY measure against dehydration because it has lots of electrolytes. Liquid jello[ cooled to the degree she can tolerate] might also be soothing.
And for what's it's worth, I am a firm beliver in pegs. Hope she does well. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
JAM #90575 02-23-2009 05:11 PM
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Get her to go for pancakes , poached eggs,soups that she can put thru a blender. There are a lot of things if she uses her imagination. I do and so does Christine. There are some foods that can slide right on down. Soft cakes work good too.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #90584 02-23-2009 06:25 PM
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Thank you all, I will pass this along to her and another friend who is just starting treatment. The Drs of the second friend haven't yet decided if they are going to give him a feeding tube or not. He's looking at 35 tx. I had one in '05 and wasn't given a choice in the matter. It looks like as time goes by, they are using them less and less. It probably depends on the individual I guess. I will say though, without the one I had, I would haved starved. I lost over 40 lbs even using it. Thanks again for you help, Carol


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
Buttercup #90928 03-01-2009 05:39 PM
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Yep, Jim is right, pancakes work with alot of butter and very little syrup. Canned peaches, soups, yogurt, pudding, mac and cheese, cherios soaked in milk, oatmeal, soft scrambled eggs with cheese, and french toast lightly cooked are all easy foods. The Carnation instant breakfast or VHC will help balance the diet. I drank alot of Yoohoos during treatment, it was soothing to my mouth and throat and thin like water so easy to swallow. Milkshakes are high calorie too, I make chocolate peanut butter milkshakes and throw in a scoop of the carnation instant breakfast. If done right the milkshake is about 3000 calories.

Even with the PEG tube I lost 65 pounds. You are correct that it is a lifesaver for alot of us. Eating isnt easy during and after tx. Best of 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
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[quote=ChristineB] I drank alot of Yoohoos during treatment, it was soothing to my mouth and throat and thin like water so easy to swallow. [/quote]

I had never tried one of these before seeing you post about them Christine. I like them and they are a good thing for me to have with my food. They are also really cheap.

Thanks
Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #90933 03-01-2009 06:25 PM
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Yoohoo also has has some vitamins. Cherck out their label, anything that has calories and vitamins cant be beat.


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
Joined: Dec 2008
Posts: 1,004
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Posts: 1,004
I know I haven't gone through the stuff you guys had, but I do know the pain of eating to a certain extent. If you have a Wegmans grocery store near you, they have hot soups. They have a shrimp bisque that is think, filling and so good. It goes down pretty good. Just a thougth.

Suzanne


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #90959 03-02-2009 04:27 AM
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I'm glad I was reading posts this morning. It made me check my supplies in the fridge.I had grandkids yesterday and they sure liked the yahooo. LOL I better get a case after I house clean.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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