I am new to this group. Brian asked me to join and I hope I can contribute as well as learn. I am a 58 yr old male, non smoker, casul drinker and avid manual biker, appx 100 miles per week. Always was a health and exercise nut. I am 1 month out of treatment for Stage IV SCC. We found 2 cancer lymphs on my left side with no initial primary. Later found primary at base of tongue. Decided to be treated at Moffitt Cancer Institute in Tampa, appx 40 miles from my home. I had concurrent chemo (3 cisplatan) and 35 IMRT radiation treatments. One of my main problems was forcing myself to swallow 6 Ensure Plus' while my throat was raw and the nausea was uncontrolled regardless of what they tried. I have recently discovered Carnation Instant Breakfast VHC which has a whopping 560 calories in a 8oz can. That's over 200 more than the same bottle of Ensure Plus. Since I am now on a 3000 calorie "diet" I only have to worry about 5 VHC's whereas I was having to take 8 Plus'. I have only tried the vanilla and it "tastes" about the same realizing I have hardly any taste. You have to order it through your pharmacy and it costs the same as the Plus and your pharmacy can get within a day or 2. If you use a CVS or Walgreens their supplier is Cardinal Health, at least in Florida. Make sure you specify VHC as Carnation has many similar products. If you, like me, were (are) having problems maintaining weight this will cut down on the number of times you have to swallow and keep liquids down. I wish I had had this months ago and I hope some of you may benefit from this posting.

David, Welcome and thanks for joining us. Thanks also for the Carnation INst. Breakfast information- it beats the 475 per can 2Cal John is on, so we are going to try it for a change of pace. We wish you a continued good recovery and miles and miles of bike rides. Amy

Dear David,

Thank you for the info on Carnation Instant Breakfast VHC. My Aunt had her PEG reinstalled two weeks ago and it's being removed this coming Monday because it's driving her nuts. I was just chatting with both my Aunt and Uncle on the phone this evening and I promised to find my Aunt something with higher calories than the Boost she's been using because she can only manage to get a few cans of Boost down the regular way per day and she's getting thinner and thinner with every passing week. My Uncle can pick this up this weekend.

For anyone who needs higher calorie liquid nutrition, you can go to the Nestle-Nutrition website, plug in your zip code and they'll give you a few options for places to buy VHC.

Thanks again David and thank you Brian for bringing David into the family. David, I wish you success in your recovery. Give it time, have patience and I'm sure you will achieve what so many other brave warriors have achieved on this forum.

Hugs.......

This is a good recommendation for those of us struggling to swallow enough calories to get off the tube. Thanks.

Some people love Ensure and Boost - to me that stuff would gag a maggot (along with all of the protein drink crap). I think it was a texure and consistency issue as well. I lived on Carnation Instant Breakfast. I actually could taste the Espresso flavored one but you had to purchase the 3 flavor package to get it. I tossed the strawberry and added Hagan Daz coffee flavored ice cream to the vanilla. Milk and dairy based products just seemed to work better for me.

Not only do I like the taste of Boost (but not Ensure)...I have a Hi-Protein strawberry every morning after breakfast and 2 to 3 Hi-Protein chocloate Boosts during the day, I have given bottles to my curious golf companions who have seen me drinking it on the golf course, and a few of them now buy it and take it on the golf course too. Although I have gotten back to my ideal weight and have no need to gain any more, the stuff makes an ideal and easy to eat/drink snack for me when I get hungry between meals.

Danny G.

To Lisa... If you try to find alternative outlets you will pay double what your pharmacy will charge (I know) and the pharmacy can get it for you in a day or two w/ you just picking up the phone. Get you Dtr to give you a prescription and your ins may cover it.

To Gary...I hate the "taste nad texture" of all those products BUT they do give you the most bang for the swallowing buck and also include all the Vits and mins you need. So for now I will swallow and hope I control the gag reflex. Again w/ the VHC you down 560 cal per 1 8oz can so do the math, whether you are on the tube or down the hatch you require much less time and energy. Maybe Carnation should pay me...Anyone listeneing, I could use the extra cash flow now.

Danny G--sooo- has the Boost improved your swing and your score? Amy

David, I picked up my case of VHC/560 today. Good thing I can't taste it, cause I'm sure I would hate it. Anyways thanks for the tip, since I can still swallow its thick enough as not to cause too much pain. Hopefully it will get the Dr off my back and help me heal up. I have two more XRTs then I'm done and I had my last chemo today.

I paid about $30 for it(VHC), you'll have to contact Carnation for you commission :-)

Tim Stoj

Free shipping if you order from the Nestle web site. We use another Nestle product (Nutren 1.5 which has "only" 375 cals per 8 oz) and I order it on the Nestle site. The price is competitive (and half of what the home health service of our hospital charges) and I assume they offer FREE SHIPPING on all products. For anyone who can't find a convenient retailer, this is a great option.

Joyce

Tim, I know we can't taste much, but my wife said it tastes good and she sounded sincere. Yesterday I was out and about and carried my 11am feeding in the car with me. I left in the car in the hot sun (90 degrees) and believe me it tastes a lot worst when it's hot! I paid about the same for mine to. I don't even get respect from Carnation!!

Joyce, getting it from your pharmacy comes with free shipping. The pharmacy ( at least Walgrens and CVS) get it from their normal supplier and it usually only takes a day to get it.

Thanks, David. I posted that info mainly for those who live in more rural areas and might not have a major chain pharmacy nearby or simply want the convenience of delivery to their door.

Joyce

David,
Thanks for the info on the carnation VHC. I did order it on the internet and got it in a few days, cost was about $40. Does it come in any other flavors??? I am going to try through the pharmacy next time.
I ordered it for my mother, she gets tired of the boost. She was using the carnation packets but you have to mix with milk and this causes a lot of mucus. Actually her appetite is very poor.
My mother 71yr has SCC on tongue and had surgery and finished IMRT on July 3rd. She's about 3 months out of treatment. She was a stage 2.
They did CT scan of neck prior to treatment and all was normal. They said if she had any micro mets to lymph nodes the IMRT would take care of that, so that is why she did not have any nodes removed.
I was just wondering how your experience was with the IMRT. Sounds like you are doing pretty good.
My mom is having many problems.
She did well with her surgery 1/2 tongue removed and then started IMRT about 8wks later. She did fine through her 34 treatments. 2 wks after treatment she started with the side effects.
Sore tongue first and gradual pain around jaw and ears. This got to be really bad and she started taking pain medicine.
Long story short she was on oxycontin every 12hrs.
neurontin 3 x day for nerve pain and percocet break through pain. Lots of mucus problems.
I would go see her and she was sleeping all the time. we finally got her off the pain meds, this has subsided, she just takes motrin liquid for pain now and we are weaning her off the neurontin.
Then just got thrush in her mouth, the dr. said looked bad. This however is getting better with nystantin swish and swallow and almost finished with diflucan.
Her pain is just about all gone. But now it is very hard for her to eat, appetite is poor and she has a lot of mucus in her mouth. Tried mucinex and helps some.
I see some improvement weekly. It just seems like it is a very slow process. She has a hard time swallowing or I think she is afraid to try different things to eat.
She was eating pretty good after surgery but since the IMRT she is having this problem.
She just eats yogerts, boost, some liquidy soups etc. She was having a hard time just eating cream of wheat. Also having hard time taking bigger pills and speech was poor.
Since she stopped the oxycontin and almost of neurontin her speech sounds so much better.
I think she was actually over medicated. speech was slurred.
The IMRT was directed mainly at her tongue, so her throat was never really that sore.
She can taste a little bit.
I was just wondering if you had the mucus problems and how was your pain??
Like I said her symptoms came on just shortly after treatment and she went down hill fast.
The pain was the big issue, shooting pains around her jaws and top of head. This has gotten so much better.
The biggest problem is appetite and mucus.
I am hoping to get her to start drinking the carnation VHC to get the calories in her.
She didn't seem to interested when I took it over.
Like I said she just does not feel like eating.
Does not have peg and I am thinking now she should have gotten one.

I have mentioned to the dr. speech therapy to help with the eating. He wants the thrush to clear up first and then we will see. Part of her tongue is removed and her sensations are different so I think she needs help with ways to eat.
She has never smoked and doesn't drink. She was a very active 71yr old. No other health problems and would go to the YMCA 3-4times a week.

Thanks for listening and any info would be helpful.
Thanks, Michelle

Michelle,
the milk and mucous connection is an urban myth. IMRT (or any radiation for that matter) and Cisplatin will cause mucous problems for a while and that is a fact. Some of that "mucous" may be thick stringly saliva from damaged salivary glands as well. It took my salivaries 18 months to make a full recovery. The mucositus started disapperaing about 2 months post Tx. My pain level was intense for several months post Tx but many have had different experiences. As far as appetite, I had to force feed myself and kept a journal.

I am very greatful that I was able to get IMRT. I have relatively few problems today. They irradiated some of my nodes also but I had no surgery. Tonsil and BOT are treated the same way as a general rule.

It's a little unusual that they would give you Diflucan and Nystatin at the same time. Diflucan is more effective than Nystatin. At one point I was taking 400 mg a day. There is also a recommended maintenance dose of around 50mg/day. I have read that some AIDS patients take as much as 800mg/day. Thrush can cause a lot of pain and swallowing difficulties as well. Yogurt cam help with the thrush a little but it has to have acidolpholis in it.

I am also surprised that they let her get away without a PEG. I refused one myself but for many here it's been a lifesaver and convenience. I lost over 60 lbs.

Carnation VHC didn't exist when I went through treatment. I used the packaged stuff. I found that I could still taste coffee some so I used the "Espresso" flavored packages, unfortunately, they don't sell it separately so I had to buy the multiple flavor packs to get it.

Big pills were tough for me also. I preferred the morphine for breakthrough pain. It was the fastest acting and the pills were very tiny.

I've asked several pharmacies about the VHC formula and all of them said they hadn't heard of it, even the ones that were listed on the carnation website as supposed carriers of the product. I guess I can just order it online and wait for it to arrive. I've been keeping count of all the calories my husband takes in, and it is now a mix of some solids and some liquids (mostly Muscle Milk that we picked up at GNC). He has 14 more IMRT treatments left so I'm sure he will be on mostly liquids by the end. Does anyone know how many calories someone should consume in a day if it is liquids only? Right now I've been making sure he gets at least 2000 calories a day having a combination of liquids and solids but I would imagine that if it is liquids on it is much higher than that. Any advice is much appreciated!

Michelle

Michelle,
Yes it comes in choc and I believe strawberry although I have only tried the Vanilla.

Your Mom is 71 and had surgery. Hard to compare when I'm 58 and had no surgery. I am almost 6 weeks out and am doing pretty good. I am starting to get my taste back and I think my dry mouth is also improving. My hearing is about the same as when I finished. I am much more active even though I still tire quickly. I just caught my wife's cold/flu/? so it has compounded a lot of the normal side effects.

My first week after treatment was probably my worst. I ended up in the hospital for fluids,etc. I also had thrush which they treated with Diflucan and it took care of it. In week 2 I started swallowing mashed potatoes, mac & cheese & fruit cocktail. I also found the VHC and by cutting down on the number of times I had to drink it helped me a lot. I now drink 5 VHC's a day for 2800 cals and have gained 10 pounds since week 2. Yesterday I also ate 1/2 cheesburger w/ kep, onions and pickle-no bread and I could actually taste it for the first couple of chews.

The mucus was a big problem for about weeks 2-3. Then I got the dry mouth and now I think that's showing improvement. I still have water with me constantly.

Have her drink the VHC or anything at room temp.

I was also a non smoker and casual drinker and very athletic until I was diagosned. So much for trying to always treat your body like a temple!!

If she or you wants to private post me feel free.

David

Michelle #2, Do you have Wlagrens or CVS out there?. When I called Carnation they gave me the pharmacy's distributor and their product number for that distributor. It helped the first time I ordered it.

You can go online and type daily calories and tpye in your husband's weight, height, etc and get apretty good idea of the proper cals needed to sustain weight and then add 500 extra a day to gain 1 pound per week. I drink 2800-3000 a day and I put on appx 2 pounds extra a week which is a lot for my stomach.

Yeah, we have both those pharmacies out here but they couldn't find that product. I will try your recommendation and call Carnation. Thanks for your help! I also tried the calorie counter and it looks like I'm doing right. He has put on about 1 lb a week so far, mostly because I've been feeding him really bad junk type food for the past 4 weeks as prescribed by his doctor, but we don't want him to continue doing that anymore so that's why I was glad about your product recommendation. Thanks again!

The HEB pharmacy here in San Antonio was having a rough time finding it too. They finally got it when we gave them the NDC # 0065-9050-76. You may try that. The UPC # is 9871603901, just in case you need that. Hope this helps.