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Gary #98061 06-24-2009 02:15 PM
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My sores didn't develop until my 4th week and that's when everything started to go south for me. Surprisingly the sores weren't all that bad for me. The nausea was my nemesis which brought along a lot of "friends" like Mr Dehydration and Mr Constipation.


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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LOL! Well I am stock piling for war! I have gotten soooo much stuff to try and battle this treatment I dont even know what to use and what not too....I'm sure everyone is different and some of this stuff might help and most of it probably wont. I have cephasol, mouthkote, ulcerease, biotene dry mouth toothpaste and biotene moisturizing gel, a damn case of fluoride gel, bought a braun series 7 electric razor (thing is great) and like 5 super soft brissle toothbrushes! Of course going to use all the natural stuff too, like this huge ass aloe plant I recently inherited and simple saline mixture. Am i missing anything??? lol, let me know? Oh yea I have 2 cases of Gatorade G2 and 2 cases of Boost Plus!!! Haha, It is nice to be married to someone that works in a ENT office, I get on the manufactures website and her doctor plugs in his info and they ship the stuff either wholesale or free samples! If anyone is getting shafted on there fluoride gel let me know! I got cracked $18 for 1 2oz tube and just ordered a case of it from www.carsondental.com (of course you need to be a physician) for $150 (24 tubes) I'm not making my dentists benz payment....well maybe I am......


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
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That's really cheap. What fluoride brand is that? How do you look it up on the left hand menu, i.e. what category?

You should have gotten the CIB VHC instead of the Boost Plus. VHC has 200 more calories in the same size can and SIZE WILL MATTER later on. lol

One more thing, don't get caught up in the "I like the way that tastes today so honey go out and buy a case of it" fever because as you progress in your Tx everything that tastes OK today will taste like crap tomorrow. I kid you not.


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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Yea you mentioned that before and I looked at walgreens and Bjs but couldnt find it. This boost plus (I have no idea what it tastes like) had the most calories of any I looked at. I will look for that a cvs and publix again. Its carnation instant breakfast right? As far as the fluoride goes you look on the left side under preventitive and you will see fluoride click on that and you will see it. They have a couple different ones.


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: May 2009
Posts: 113
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Ok so not that you need it anymore but I just found CIB VHC on amazon for $26 a case! I bought 2 cases you are right it is lactose free and carries 560 cals in 8oz! Perfect! So I should have enough of that stuff! When did you start having to slug those down and how long was that the only thing you could eat last? I figure I need to put down 4 of those a day correct along with 60-80 oz of gatorade or water! I am sure I will not want to look at a meal in a can for a long time after this! lol


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: Jun 2008
Posts: 148
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I hope you buck the odds and make it well into the tx before issues arise. Rest assured, you can ask any question here during your journey and someone will likely have experienced it.
Good luck.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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My mom just finished her chemo last week and her last radiation tx. was Tuesday. I can't believe they waited so long to give it to her, but they JUST gave her the Calphasol last week. They gave her a month's worth in a starter kit but she said it was $700+ for a month's supply. She says it works very well for her mouth pain but she isn't going to pay that for it. Yes, it will be a long time before you will want to drink your meals after this. But they're right... drink away for nutrition and prevention of the bad guys - dehydration and constipation. Mom had problems with all of this. She has a hard time getting in all she's supposed to. Take care--I'm sending good wishes your way!

BE POSITIVE, Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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Jim,

You really should do 6 cans a day and just figure on those 2 cases as a baby starter kit. I drank VHC for over a year post Tx. At first exclusively for survival, then gradually I morphed into a can with each meal mixed half and half with whole milk to make sure I was getting my 3000 cals a day. Even with that I didn't gain a pound my first year of recovery. The recovery will take a lot of calories you won't even realize are being consumed. Also I eventually had to drink everything room temp so watch for cold sensitivity.

Check with your nutritionist as I'm not sure if Gatorade is a straight 1 for 1 substitute for water. Besides Gatorade tasted like crap about 5 weeks into Tx and stayed that way for months post Tx.

Your mind will be very unkind to you during Tx. When you start to loose your taste but you are still able to eat, you will picture your favorite type of pizza or something and mentally you will taste it perfectly so you will get one and then reality will hit you over the head as you bite into it as you scream "WHAT THE HELL IS THIS?"!! Very cruel until you are able to fight off that mental taste thing.


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 I can always rely on you to give me all the positive news! lol! They told me to drink as much gatorade G2 (less sugar) as I can drink along with water. Even told me to drink pedialyte since it has even less sugar and more electolytes! Well I am hopefully not going to have to start drinking my meals till at least week 4-5 especially since I am not taking the PEG. I have gained 17 lbs in the past month! Tell me I cant put on the lbs! lol!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: Jan 2009
Posts: 1,844
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Good Luck Jim, I'm pulling for you buddy. The boost plus chocolate didn't taste bad but was hard to get by my pharmacy so switched to Ensure Plus. Still less calories then the VHC but not bad substitute.

Keep your chin and spirits Up!

Eric


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.
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