Hi all:

I just started Chemo (Cisplatin) and radiation, and have been unable to get much nutrition down either my throat or food tube. I am on several meds including Emend and Prochlorperazine for nausea....they still leave me feeling pretty ughhh.

Does anyone have any tips on foods which might be more tolerable? Also, I am concerned about my food tube; the hospital never gave me any directions on it. Other than flushing w/saline solution after feeding, what other maintenance does it need?

Thanks again,

Mike

Dear Mike - My son did not have Chemo nor a food tube, but he did have several weeks of radiation and he found that diluting some of the liquids with water helped him. Everyone is different, tho' and it seems to be a try and see what helps kind of thing. He did get his nausea med changed because the one he had no longer helped. Lots of people here have had experience with feeding tubes and chemo and I'm sure you will be hearing from them soon. You can also do a search (see top of this page) and get lots of information that way, too. Hope things get better for you soon.

Dear Mike,

My husband started using his peg pretty quickly as he began treatment with trismus and the combo of induction chemo he was receiving led to thrush, mouth sores and nausea. Because he would not be tasting the food put through his tube, the nutritionist at Hopkins arranged for him to have a flavorless (and very little odor because that can cause nausea in some) drink high in protein and other daily requirements called Osmolite made by Ross. I think a lot of people on this site drink or use in their peg Carnation VHC because it is high calorie per ounce. Although we are pretty new at this, I think he recovered pretty quickly from the nausea and pain because he was getting adequate nutrition (and nausea and pain meds) and just as important- adequate hydration through his peg tube as he has been taking about 3 additional liters of water a day through the peg. We were told to simply flush the peg daily and we do so with regular water after he was osmolite. If he doesn't use the peg for a day, we were told to do the flush just as you have. After several days of using the peg for most of his food and water, my husband has been feeling so much better and has been eating small meals of all sorts of food (not enough to keep his weight up). Sometimes he will think he wants a certain type of food and then just find it doesn't taste as good or go down as well as he'd thought. I think that key thing for him was that he quickly became dehydrated when he started to eat less and that increased his reaction to the chemo and the side effects.

Mike, Flushing the tube and keeping the area clean where it enters your stomach is really the only maintenance it needs. If you are starting to take food via the tube, you may need to experiment to see what works for you. I always did a simple gravity feed--pouring the liquid food into the syringe, holding the syringe above stomach-level, and letting it go down the tube into my stomach at its own rate, and that worked for me. You can also push it through the syringe with the plunger but that always made me very nauseated--I use the punger to flush water through when flushing, but not for feeding.

Some people find even the gravity feed leaves them nauseated and they have an arrangement with a bag that drips the food into the tube at a slower rate, you can even do this overnight though it mean you have to sleep in a semi-reclining position.

As far as the area where the tube enters your stomach, it is normal, in my experience for there to be a *little* bit of stuff oozing. Some people place gauze over it to soak that up but that got to be really a hassle for me and the tape I used started to irritate my skin, so I just leave it open and let things get a little scabby during the day and clean it off when I shower. if you have lots of ozze, or pain, that could be an infection and you should see someone. But even when it's not infected, it is basically an open wound and will ooze just a little.

In terms of foods, when I could still eat during radaition, ebefore the mucostitis got bad in the fourth week, I had a lot of soups and yogurt in the soup for some protein. I ahd some mac and cheese and I drank a lot of gingerale for a week or two, because it helped calm my stomach, but it started to irritate my mouth eventually. When I got to tube-feeding, I eventually got a prescription for Jevity, which has fiber in it and some other stuff that over the counter liquid foods, like Ensure or Boost, do not have. But you can also do ensure or boost (my insurance paid for the jevity--it is more expensive).

As much as you can, keep trying to swallow something everyday so your swallowing muscles do not get rusty. there are also exercises you can do to keep your swallowing muscles working duiring radiation. if you have not already, see a speech pathologist about this.

Good luck with it all and keep coming here with questions or just to vent when you need to.

Nelie

My husband has only had his Peg for two weeks, but I can tell you that the pump has made a big difference for him. He just can't have a whole lot of anything put into his stomach at one time, or he starts throwing up. The pump is really easy to use, and it gets almost 2000 calories in him overnight at a very slow rate. He has to sleep in a recliner to avoid reflux, but he sleeps better there than in bed right now anyway.

Good luck!

Mike,

I didn't have a Peg but I would open a room temp can of VHC and drink it as fast as I could without stopping and then get back in bed and pray. Didn't work as often as I wished it did but I survived anyway.

Hi, Mike, lots of good tips above -mine are short and sweet- use your peg to get as many calories and as much hydration daily as you can before you start radiation. Use this time to experiment with which peg food nutrients your stomach will tolerate and which technique works best. You want to stay ahead of the game here. At the end of any peg feeding, flush the tube with 6 to 8 oz of plain water and keep the area around it clean. Amy in the Ozarks

Hey Guys,

Thanks for your input. I'm going to talk to my doctor about maybe a new med. for the naseau.

Take Care,

Mike Thomas
Cincinnati