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#88458 01-19-2009 08:07 PM
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Geri Offline OP
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I went on Amazon to order and wasn't sure which product is the best. Vanilla flavored would probably be the best, but should I order lactose free? There are a few choices and we want to get what is recommended by people on the forum. Could someone post an answer? Thanks, Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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I only know of VHC to come in vanilla...it's an 8oz can

the label will say Nestle nutrition carnation instant breakfast lactose free VHC 560 calories....

Again, I've only seen vanilla and I get mine from Amazon..

Last edited by Ray1971; 01-19-2009 08:35 PM.

7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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If you are not lactose intolerant, I used the Carnation Instant Breakfast that came in multiflavor packs. For some unexplainable reason I never lost my taste for coffee flavor so I used the vanilla and espresso packs and gave the strawberry ones away. I added a scoop or 2 of Hagen Daz Coffee Ice Cream to pump up the calories. The VHC wasn't around then. It kept me alive. The milk made it go down easier as Boost and Ensure was thick and the taste gagged me.


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)
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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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The VHC ONLY comes in Lactose Free (Yummy Double Thick) Vanilla unless they have added a new product in the last couple of weeks. I drank that stuff until at least a year post Tx. Post Tx, when I no longer needed to gulp it down, I mixed it with an equal amount of whole milk to cut the thickness. I still have a case of it besides my office refrig. I have tried several times to give it away and now it's outdated.


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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Geri Offline OP
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David, I'm glad I caught you. Richard and I are also bike riders and I wanted to ask you how long after finishing treatments were you able to at least ride around the neighborhood? Also, how did you manage with the fluoride trays when the mouth gets so sore? I posted on the "currently in treatment" thread about the bike riding question. Thanks, Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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Geri,

Ask for a scripted fluoride toothpaste. I use my fluoride trays, but I like to use the scripted fluoride toothpaste if my mouth gets sore for some reason. Sometimes my tongue seems swollen and it rubs against the trays. The toothpaste also comes in handy for trips. Easier to use and I don't have to worry about loosing my trays.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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When my mouth was really sore during treatment, I didn't use my trays because I had huge ulcers on the side of my tongue. I just brushed my teeth with the fluoride gel. I figured it was better than nothing. Also, I drank the regular vanilla Carnation Instant Breakfasts. When I was using my PEG I used 2calHN and tried drinking the stuff when I stopped using my PEG, and oh geez, that was nasty. I also couldn't stomach the boost and ensure, so I used the regular instant breakfasts (vanilla) from the grocery store for a couple weeks. I stopped using those eventually and started making my own smoothies with protein powder and now I can't stomach the thought of drinking another smoothie and even ice cream reminds me of them sometimes and kind of makes me want to gag!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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I tried using my trays every night during Tx but obviously when I couldn't I didn't so I missed at least a week of nights.

I'll respond to the bike thing at the other post.


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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Geri,

I didn't see anything on Currently in TX so I'll try to answer you here.

I was a pretty avid rider pre Tx; 100 plus miles a week at a pretty high avg mph mostly with groups that would drop you in a heart beat so you better keep up. I say that because when I finished Tx I was so weak and had such horrible dry mouth and had been off my bike for months I couldn't even think about the pack ride. I did order a Camelbak to try to solve the dry mouth thing and I guess I got up the courage to go out on my own about 3 1/2 months post. It was December but still warm enough to enjoy a good ride. I did 8 miles and hated it because I had to take my hand off the handle bar to put the water mouth piece in my mouth about every 7 seconds. Then came our cold season and my tax season so I wasn't able to get back on until May of the next year. I still had dry mouth but I found that I didn't need the constant water as long as I didn't try to talk so I was able to ditch the Camelbak. I still rode by myself but by July I tried riding with my group and sure enough they dropped me but I kept them in sight and finished the 30 mile ride. By the end of summer I was not only keeping up but I was pulling a lot and I was actually a much better climber and a faster rider probably since I had lost a few pounds. Probably also had a chip on my shoulder reclaiming my life back from cancer.

It's now Tax season so my bike is lonely again.


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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Growing up in Rhode Island we have a official state drink
Its Coffee Milk its a syrup that makes milk taste like coffee ice cream i live on it as my coffee taste was the first too return and taste good again. Eggnog saved my life right after radiation i was luckey i had my rads thanksgiving xma holiday season


Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma
April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008
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