My husband, John, is home from scc surgery [Apr. 21, 2005]to remove tumor under tounge. The surgeon also took many lympth nodes out-all clean-
We were told the tumor was the "nastiest" kind, so radiation is the next step. Don't know how many treatments. John came home with a PEG and was told to use 4 cans of TWOCAL HN a day for the 1st 7 days and then 3 cans a day for 14 days plus ssoups or ice cream.[we go back to the surgeon in 14 days] Our insurance company refuses to cover the TWOCAL. Says it's just food. We both have a good attitude, altho I am worried that John is not taking this as seriously as he should. He's building a fence this weekend. I haven't learned the lingo of this site yet, but have learned alot already from all the posts here and find that I care about all of you and what you are dealing with. Can anyone tell me where to find good soft food recipes that I can intice him with? He hates the PEG feeding and I have to remind him to do them. Thanks, Amy

He will have to learn to change his attitude about the PEG feeding. After about the 3rd week of radiation his mouth is going to be very sore (see dental complications part of the dental pages) and everything is going to taste like cardboard.... It will be extremely important for him to keep his nutritional level and caloric intake high so that his body will heal at the best possible rate. The PEG will be his solution to all this. As to the insurance company, you get the person on the phone who is handling the disapproval of this, and tell him that if he doesn't fully comprehend that your husband is on a PEG feeding system, and that requires liquid supplements to put into it, that you will see to it that your attorney discusses the matter in detail with him and his supervisor. Ask him if he thinks you should buy Wendy burgers, put them in a blender and with a turkey baster try and shoot it through the PEG tube!!! This is not a matter of choosing food on your part; there is no other alternative. In my case I had one initial argument with my insurance company (I used Ensure, in a variety of types). Once the professional (I use the term loosely) got the idea of oral mucocitis, PEG, and lawsuit into his vocabulary, they started to pay. Insurance companies do not exist to help you; they exist to make a profit... sad but true. All those TV ads with agents helping people in need, the catchy sayings like you're in good hands... in my book, and from the experiences I've heard from far too many people, are little more than marketing BS. You will have to learn to fight for everything that you need. It is time to become your husband's advocate in many areas. We all wish the both of you the best possible journey through the treatment part of this and a rapid return to a normal life.

I heard from my oncology nurse that the key to dealing with the insurance companies is to be clear that ALL of the nutrition you're getting is coming from the tube feed. If they can make the argument that you are also feeding yourself another way (like making your own protein shakes or eating soup some of the time), they will be more likely to turn you down for coverage--you've given them some kind of loophole.

We have been getting samples of Prosure and such from the radiation oncology nurse who gets them from the distributors who come by with samples. Since the facility just opened recently, she had a lot of samples from distributors, and that stuff through the tube has amde up about 1/2 my diet for the last couple of weeks. But now she's out of stuff to give me so this coming week we will do our battle with the insurance company over this.

Last week for me was the battle with the prescription drug coverage folks (a different group) over whether they would cover more than 15 Zofran tablets for me each month. Zofran is the *only* anti-nausea med that works for me against the Amifostine nausea but I guess it's brand new on the market and very expensive and they wanted to tell me once I had 15 this month, I had to pay for the rest myself (would have been 100s of extra dollars out of pocket).

I was lucky in that the medical oncologists' office got involved right away and the L.P.N. made a couple of calls to help me and explain to the insurance rep that I would NOT be needing 15 more pills NEXT month but I DID need 30 pills THIS month.

Thank you Nelie and Brian. I was about ready to roll over on the insurance claim rejection, but you have perked me up. Amy

Amy
Sorry you and your husband have to go through this but you have come to the best place for information and support.The people here are great. As far as food, John if he can should make every effort now to eat anything that tastes good. The loss of taste from radiation is not exaggerated. I highly recommend investing in a good blender. There is a shake with carnation instant breakfast, and ice cream posted on the site that has a ton of calories you can search for it and other ideas. Pasta in cream sauces, Soups with cream and cheese, deli roast beef in gravy all kinds of veggies in sauce, put into a blender all worked for Bob. He also lived on farina and oatmeal. Bland is best. The food issue can get really frustrating, trial and error is the only real approach and do you best to keep your sense of humor it really helps. I'm also glad you are willing to go another round with your insurance company. Denise

Hi Jam,

I had my radiation doctor write a script for the Jevity i feed myself with. It was a must to get enough nutrition and calories to help me heal and gain some weight. The insurance company paid for all of it. Even the syringes to input into the tube. They even delivered it to my door. No charge!
Each can of Jevity had 250 calories and I was inputting 8 to 10 cans per day. I had the tube in for 7 months. I don't even want to know how much that much Jevity would have cost me.
Follow Brians advice and demand your rights for this needed treatment at no cost to you other than mabay a co-pay.

Best Wishes and keep fighting!!! Danny Boy

Hello Amy,

That ingridents for that smoothie are:

2 Cups Whole Milk.
1 Cup Half & Half.
3 Tablespoons Ovaltine.
1 Package Carnation Instant Breakfast Powder.
2 Cups Ice Cream (Flavor your choice)
1 Scoop of Whey Protein Powder. (purchased @ GNC)

Mix in blender and serve in a cool mug. It slides down the cooler you serve it. It also is much easier to swallow pills when drinking something thick like a smoothie. They tend to slide right down.

There is about 1500 calories in this drink. It fills a tall kitchen glass about 1-1/3 times. They taste just like a large milkshake. Takes me about 15-20 minutes to drink one.

Two of those a day will help him heal & maintain or gain lost weight.

Best Wishes, Danny Boy

MMMMMMMMMMMMM. I making one when I get home Danny.

I may have to try this too. But after geting a irinary tract infection, I've realizd that just ebcause I can't take much orally and I need calries, it isn't always a good idea to get calories through sugar. I had been dnrinking a lot of gingerale (lots of sugar) and using PROSURE which, unlike Jevity, has extra sugar ebcause it's designed to be taken through mouth or tube.

I also am getting Jevity feed this week. They are coming over tommorrow from the ehalth care place to show me how it works. So far, no protests from the insurance company.

Hi, Everyone.

This thread certainly struck home. Tom has been living almost exclusively on Jevity and Two-Cal since September; the doc ordered it through the Home Health dept of the hospital. We figured it was being run through the insurance company as we never heard a thing about it...until last week. We got a bill to the tune of some $4,000....covering all the deliveries from Sept through April. Needless to say, I'm no a happy camper. I appreciate the encouraging information...and how dare they hold off billing until it amounted to enough to choke a horse?!

Hope everyone is enjoying Springtime! Tom is improving...getting back to his old ornery self! He's up to 147 lbs, but still not eating much by mouth. I do insist he try every day, however. He's really unhappy because all the calories he injests are settling in the mid-section...and he's never had a problem with that because he was so active. I told him to just keep putting on the weight and he can 'redistribute' as he gains strength! He's working out with light weights now and is going to join his dojo in a weekend training session....he'll go slow, of course, but just getting back inot his sport will be great for the mind! A positive outlook is everything in this fight, yes? I might say that the Walk held in VA Beach was a GREAT morale booster AND confidence builder for him. By pushing himself even more than he thought he would, he realized that the 'mind over matter' attitude he always held was going to be a big help at this stage of the game!
Love you all
Nicki

From what we were told insurance has to pay for the food. We were told by our nurses and doctors to just tell them that they are unable to take anything by mouth. Even if able to take sips. Fight them, with Everything else that is the last thing you need.