I'm on day 8 of IMRT and have had 3 Erbitux treatments for tongue cancer. I have daily nausea (both doctors think it is my PEG tube because if I open it and release some fluid, I feel better) but a good appetite. The last 2 days I have not been able to stand the taste in my mouth. Even water is disgusting to me. Sugarless gum is OK for a while. Sugarless candy makes my saliva too thick. I want to keep hydrated and swallowing without getting nauseaous. Any suggestions?

I can't speak to the Erbitux because I didn't have it. You will definitely develop an altered/diminished sense of taste, and it won't be pleasant. I suspect the timing and severity of the taste distortion depends on the target of the radiation. In my case the nasopharynx was apparently the target, even though I'm an 'unknown primary'. Your tongue is recieving the radiation?
My taste went away fairly early in treatment, however, and has barely returned nearly 5 months afterward. The thick saliva is annoying, and there's not (as far as I know) much you can do about it. I found that if I took a glug of water and swished around my mouth, the thick stuff floats to the top where I can spit it out. That and lots of Kleenex.

Your radiation oncologist (RO) should be monitoring you closely. I'd discuss this with him.

KristN, I also didn't have Erbitux but I did have 35 IMRT's. My taste went away after about 2 weeks and I was also left with a bad taste. Nothing in my mouth was pleasant. That will go away and you will be left almost tasteless which you will grow tired of because it will last way past your treatments. The thick saliva didn't bother me until almost the end and was replaced in about 2 weeks with almost no saliva or what they call dry mouth. During the thick stage I carried a cup and spit all the time. Now with dry mouth I carry a water bottle all the time. I am 6 weeks out of treatment and my taste is coming back and I also feel less dry. My rad doc confirmed that my mouth looked more moist than he expected last Monday.

Now the nausea...I had the worst time with nausea starting in week 3 and lasting till almost 2 weeks after treatment. I didn't have a tube so I had to swallow water and "food" and meds. I kept telling my docs-I don't care about the pain, just get rid of my nausea!!! Everything kind of works against you. They tell you, you must swallow 48 ozs of water and 48 ozs of liquid food. So they give you pain meds which causes nausea and makes you constipated, which makes you nauseaed. They gave me nausea meds that listed as a side effect NAUSEA! So I tried to swallow through the pain but I was scared that I would bring it back up and cause more pain. You start to loose ground daily and before long you are in trouble. I had to get IV fluids 3 different times because I wasn't able to keep up. Each time I promised myself I wouldn't get to that IV point again but I wasn't able to keep up. That's why we all loose weight. Some much more than others. I only lost 30 pounds but I only weighed 160 to start. I lost 10 of those 30 pounds the week after treatment ended. But that's when it started to turn around. I stopped taking ALL meds and I also found Carnation Instant Breakfast VHC which has 560 cals in the same 8 ozs that you will become used to. It drastically cut down how much I had to swallow to increase my weight and I have never looked back. I have regained 15 pounds in 4 weeks and I spend far less time worrying about drinking.

KristyN,
I pretty much have to agree with David...I lost my sense of taste sometime in my 2nd week of treatment. I've just finished the treatments so I can't speak to when things come back. I have a PEG and use it when I just can't eat. I still try to get most of my nourishment through my mouth though. I lost 12 pounds since treatment began and don't want to lose anymore. I'm glad David turned me on to the Carnation VHC I think that's going to help with the weight management. Hang in there, it's a struggle but you are up to it.

KristyN, Hi- Just wanted to share that my husband has been on Erbitux since July and the only real side effect that we can identify thus far is the rash. Since he is totally on PEG, we can't speak to whether the Erbitux might change his sense of taste-but I don't remember reading that as a side effect. I would venture a guess that the radiation is working on your taste buds at this point. Amy

All, Where do you buy the Carnation VHC? I've looked in numerous grocery stores in So Cal and can't fin it. My daughter starts rad next week and I want to be prepared. She's getting about 2000 cal now thru the PEG. Thanks!
Bonnie

Bonnie

We ordered it through the HEB pharmacy in Texas. I would call around to places like Target, CVS, WalMart etc...pharmacies and ask them if they can order it. I think it's about $30 a case.

Bonnie, It's not available in retail stores but you can call like Walgrens or CVS ( the pharmacy dept )and they can get it for you in a couple of days. You only have to order 1 case at a time and I pay only $23 per case. That's cheaper than Ensure Plus. If you don't have one of those or they give you a rough time ordering it call Nestle at 1-877-463-7853 and give them your zip and they will tell you who can get it for you. Once you do this future orders are a breeze.

It comes in different flavors and they tell you to serve it very cold. For the first few weeks I couldn't tolerate cold so I drank it room temp.

That product saved me a lot of time. When I was nauseated it meant I had to swallow (no tube for me) much less each day which meant less chance for nausea. For your daughter or you it will mean less time feeding that tube each day. In fact I still drink 2 cans a day plus I eat 1 to 2 meals. I still don't really enjoy eating and my nutritionist has no problem with what I am doing as long as I get the cals she wants me to.

Thanks so much! I'll call Walgreens tomorrow.
Bonnie