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blc6571 Offline OP
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Marvin is struggling more with getting his required amount of boost or carnation down lately said he can't handle the taste anymore. Any ideas on how to make this stuff taste better. I have been mixing chocolate syrup with some of it but he is still haveing a hard time. Also could this be from the swelling he still has that makes it difficult to drink. They said yesterday at his 3 month ck up that he still had a good amount of swelling.


Barb
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Barb - My son used Boost but had the same reaction after a few cans of it. His tastes changed all the time so I learned not to buy too many cans of anything. After Boost, we went to using Ensure which worked for a little while and also the Carnation VHC (which has more calories). Another thing that seemed to help was to dilute whatever he was drinking with water. He also went from chocolate to strawberry to vanilla milkshakes in the blender - said the chocolate tasted funny. He also took a liking to different flavors of sports drinks. I think it's just a matter of trying different things. I'm sure others will have some good ideas.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I put cinnamon in my protein drinks.I thought that tasted really good, or as good as could without tastebuds.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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I think any of those protein drinks taste better mixed with good coffee. But of course you can't drink coffee all day long.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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We kept a variety of icecream toppings in the frig to add to the canned drinks- and just experimented. Anything chunky I would puree before adding it. 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

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You have to experiement with different flavors. The espresso flavored Carnarion Instant Breakfast worked well for me and I also drank daily Hagen Daz coffee milkshakes (doctors orders actually).


Gary Allsebrook
***********************************
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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Coffee...and ice cream toppings...milkshakes...was this during or after IMRT?

Coffee, chocolate, sugar, and fruit (every kind) all went on the list of "hurts/burns/tastes like h#@#" awhile ago.

He's so bored with vanilla Ensure and VHC, but I've given up trying to jazz them up a little as everything seems to make matters worse not better.

How long does it take post treatment for things not to hurt so much? Barb, how far is Marvin post treatment?


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Margaret,

I know you probably hate my responses but...

Dan is in a war right now and he just needs to pour that stuff down as fast as he can. His taste is probably pretty shot right now and will be for many months to come so don't worry about frills, this is WAR. Tell him to open the can and open his mouth and let gravity do it's thing. If he's worried about subtle tastes then he ain't as bad off as most of us were. It got so bad for me that I would drag myself out of bed, open a room temp VHC, drink it fast and then hold my mouth closed with my hand while standing over the sink and prey that it would stay down. Taste was the farthest thing from my mind.

Re the post Tx pain. I'm sure you've been told it's an individual thing and it's true. He will recover when he does but it will most likely be MUCH slower than he wants. Even once he walks out of that tunnel he will be surprised that one day he will feel better and the next day he will feel worse. That scenario may last for months. Look, I think by comparison I recovered quicker than a lot, but it really wasn't until my 8th or 9th month that normal started to really return.

I tried from your first e mail to warn you and Dan and I tried to paint as ugly a picture as I could to get you to understand that this is not the flu or a bad cold. This is a deadly cancer that does kill even with the vastly improved Txs we get today. Please go with the flow and don't expect miracles.


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.
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David,

While I am always in search of the magic solutions that will take away all of Dan's symptoms, pain, depression and discomfort, your posts keep me in check in that all is as it should be at this stage in the game.

So, you are correct, I hate your responses because they aren't offering what I am looking for right now...which is a miracle...but, I have much gratitude for your responses because they help me to realize that we're on track for where we are at.

And, I enjoy reading your posts about how active you are and how much you are biking...I love looking towards the future and believing that there is a life post treatment that includes solid foods, exercise and a good quality of life.

So, please keep replying...I need those reality checks.

Thanks!


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Margaret,
My husband, Kyle, had a tongue tumor removed in March and just ended his treatments about 5 weeks ago. During treatment and a few weeks after he just could not get the Ensures or Boosts down. They actually made him gag. He could drink just milk or milk with regular Carnation Instant Breakfast in it. I would occasionally add that whey powder for some extra protein and calories. I figured better for him to drink something with fewer calories termporarily then little of the Ensures because he hated them so much. After a few weeks the Ensures were not so bad again and now he drinks 3-4 a day plus eats some foods. He was always able to eat fruit flavored yogurt too. Good luck! Tamara

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When I was living on nutrition drinks ( I used Resource 2.0, vanilla) I had a couple of different methods of adding flavor.

One was adding iced coffee syrup; there are a couple of products out there designed to mix with milk, and they worked well.

My favorite method was to add frozen fruit smoothie mix. they come in just the right size for blending with an 8 oz. nutritioin drink, and turn a pretty blah experience in to a nice milkshake. The bonus was that the smoothie mixes also added about 200 calories to the drink, so with the 500 from the Resource, made for a reall high-cal meal.
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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blc6571 Offline OP
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Margaret,

Marvin is starting his 4th month. He is sick of the taste of these drinks. I keep telling him we have to get the nutrition in regardless. I just got a food processor today so I hope to get things going for him that will add better flavor. He was told by the doctors that he still had alot of swelling so I an not sure if this is making it harder for him to swallow thicker foods. He struggles alot with how to get more liquid in and try to chew foods. I pray in time he will learn to take small sip of water just enough to mix with small bites of food.


Barb
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My husband was having such a hard time of swallowing and we were afraid he would lose his ability to swallow and he was on the peg. The dr. told him he had to swallow at least 2 tsp a day. My husband said he cries the pain was so bad when he swallowed. The dr. replied "Then you force yourself to freaken swallow and you freaken cry!! When he spoke to my husband like that it really jolted him. Which is exactly what he needed at the time! There is no easy way out of this tunnel, can't go around it or over it just Through it!!! Praying for all. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
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Barb, how is the food processor working out?

LJ, I told my husband what your doc told your husband...our team is firm but not that firm. Your post actually got a smile out of my husband and he is getting a freaken protein drink right now even though it is hard and laborious.

Wayne, is Resource a Canadian drink...I went to a bunch of stores yesterday looking for more options.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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I have very little saliva so it is difficult to eat food. I have concocted a great drink which I take every morning & gives me all the nutrition I need as well as it tastes great! 8 oz. or so of choc. soy milk, soy protein powder, Vitamin Shoppe vitamins & mineral powder, 1/4 c. Shaklee meal replacememt, 1 banana, some choc. syrup, a good amount of vanilla yogurt, then 3 tbs. of peanut butter. Then I take some other vitamins. I am probably more healthy than most people. I have also gained a little weight. Good luck if you try this or some combination of it. It works for me! Jean


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I have posted before about a drink called Resurgex. The nurse at chemo had given me samples, then I ordered my own over the internet. It comes in a fruit smoothie, van, & choc. flavor. Their Resurgex select has protein and vitamins for people going thru treatment. I still drink them. I blend a yogurt, or fruit in them and they are good. They aren't milky or thick like boost. The website is www.regurgex.com. Maybe look into this. Also does he use a straw? I found this very helpful so I didn't have to taste things too long, just suck it down and get it into the body!! Hope this helps someone. Linda


Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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Sorry, about the misspelling of the website. It is www.resurgex.com.


Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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blc6571 Offline OP
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Margaet

I have only tryed the food processor a few times the fist time I had made swiss steak and put it in with lots of gravy. Marvin got some of it down but didnt like the taste of the gravy. Also had mashed potatoes with it so he had a little of that. Litte is less the 1/4 of cup but it is a start. The other night I tried a recipe from the I cant chew cookbook. I made the misstake of getting the chicken to finley chopped up. I need to find the right size of chopping that Marvin can handle. I will keep trying. I have been looking for more cookbooks that are for people who have swallowing trouble but havent found to many. I just need to find that One thing that will make Marvin say I can taste this and it is good.... Those taste buds seem to still be on vacation.


Barb
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Hi, Barb, You are probably going to be disappointed with buying cookbooks. I found some good recipes by googling for toddler and children's recipes. There are lots of good ones on this forum too, altho I don't know how scattered they are. It is mostly trial and error for awhile. Amy in the Ozarks


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

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