Hey Tom,

Again, sorry that you are here.
I finally settled on Bioteen Oral Balance LIQUID. While it's thiner than the jell version, it's still a little thick.
Since I discovered it well after my pallet began to return, I can't swear what its going to taste like, but to me it tastes like bubble gum, unlike the Gel version.
Known for forcing "normal people" to taste it, I am told that it tastes like rancid bubble gum. It has done wonders for my teeth.
Finding that night time drying a problem, I started to sleep with a steamer running. Care must be taken to keep the tank free of bacteria, even though they work better with older water (electrolights) minerals build up. this practice hasn't been good for the house itself and it was some time before my wife accepted having it in the room.
There are other, perhaps better devices available I hear, as always, consult with to your doctor about this one.

Good luck!

UncleVern

Hi Tom, I'm an Oral Balance user, also. It took me awhile to get to it however. I always kept a big glass of ice water on the night stand. I'd wake up periodically for a drink. Now, I can finally sleep through the night without a drink and the "aging" ritual of waking up early in the am to use the bathroom has begun. Nice, LOL

My wife is out getting supplies right now. I look forward to my experiment with the spritzer version of Biotene. Hope it does the trick. I was trying to swallow thinking that would help, or take that sip of water every 30 minutes. I'll post tomorrow on my new experience with Biotene.

Let me know what you think. I use the liquid version of it. BTW I am just now able to drink a glass of wine without it burning my mouth and throat too bad. I don't taste it much but it's a nice thing to be able to do again.

Hi Tom

Welcome to OCF. Glad you have found this forum for support and to answer your questions. I can help you with info about your feedings.

What speed are you running the pump on?

As far as sleeping on an incline, its ok to sleep like that on your side. Check withyour doc about sleeping meds. I was given trazadone for help with sleeping. Thats something that bothers alot of cancer patients. Then on top of that the noise from the pump can be annoying. Believe it or not, you do adjust to that. Or you could run a small fan to give you soem white noise, or better yet a humidifier. Its ok to use several pillows for sleeping on the incline. I used 3 and then slept on my side while the pump ran.

For your mouth try rinsing in a mixture of 2 tsp salt, 2 tsp baking soda and a quart of water several times per day. If the salt bothers you then cut it back or omit it. Also magic mouthwash works wonders, ask your doc.

Its necessary to swallow daily just like stretching your mouth open wide daily. Both need to be done several times per day.

Sorry to hear you have lost your voice. That happens to alot of us too. My best friend became the dry erase board.

Hang in there, ask questions. We are here to help you thru this.

Welcome Tom. Our cancers have been similar as have the treatments. Sounds like you have a wonderful attitude which will help you hugely as treatment and recovery progresses.

Any questions or help - emotional or practical, we're here for you.

Donna

Here it ia 3:30AM. Of course, I did go to bed at 7:45, so maybe not so bad... except for hearing the tick, tick, tick, tick, of the clock since 1:AM.

I run my pump at 90ml/h, which is going to be about max for me, as my stomach seems to be sensitive. Sent me to the ER last week. But that may have been a kidney stone (I hope not).

Your pump speed is pretty good. During the day are you using the pump or doing the gravity or bolus feedings? The reason Im asking is, are you able to get in more that 1 1/2 of those big syringes per hour. A large syringe is 60. You had mentioned difficulty in getting your daily water in. If you want to give something a try, and do a few flushes daily it will make getting the water easier. Just dont forget to swallow water also.

I had alot of problems with adjusting to the tube feedings so I have a few pointers for you. First your formula the doc gave you is Nutren 500 calories per can. They want you doing 6 cans per day which is 3000 calories. Try loading it at night with 4 cans and 1 1/2 cans of water to dilute it. That will make it much easier on your stomach. Then during the day you can sit and watch tv in the afternoons while having 'lunch' of 2 cans diluted with 1 can of water. After about 4 days try to turn the pump up to 100, give it a few more then try 110. I wouldnt go much higher than 140, it will reduce your feed time dramatically.

This worked only thru alot of trial and error. I was guided by my nutritionist after a couple hospital stays for malnutrition and dehydration. It has worked well for others who have tried it too. Hope it helps you.

Thanks fro this advice.

My max stomach input rate appears to be pretty much 100. That means I'm doing 3 cans + 1 water during the day, and 2 cans plus 2/3 water at night. Pretty much taps out all I can have, incuding water orally. So to make up for that, they're hrdrating me twice a week in the Chemo Lounge. That just makes me a official Chemo Lounge Lizard.

Better that than what I was...ER Lounge Lizard