H is 17 treatments into RT, the doubles start Tuesday. Taste is not gone but nothing tastes right and nauseates him. Already on compazine and prevacid. Even the peg tube feedings are leaving him feeling overly full and uncomfortable. We've tried slowing the feeding, less food, about the only thing he's getting down is cream of wheat and tea. Anyone want to chime in on how the taste changes...from this nauseating thing to no taste at all or with suggestions of something that may remotely taste like it's supposed to at this stage? He can still swallow soft stuff - at least as of today. Thanks - Cheryl

He's right at the point that everything tasted bitter to me and soon after nothing tasted good except I could taste some sweetness. I never experienced any nausea from not tasting correctly but I did have nausea from the pain meds and the chemo. Remember each person can react differently to the same basic Tx but for most of us we lost our taste around the 3rd to 4th week and things slowly went down hill until the 3rd week post Tx. Some of my taste started to return 4 months post and it was not until 15 months post Tx that I finally was satisfied with my taste and drymouth recovery. He will soon be on a liquid diet for the most part, if not totally and he needs to find something that will get him the most calories for the least amount of effort. For me that was Carnation Instant Breakfast VHC with it's 560 balanced calories.

Above all he needs to get around 3000 calories and 48ozs of water EACH AND EVERY DAY from now until a long time from now. His body is under attack from not only the cancer but the Tx and it needs fuel and water to fight back.

Can't speak for myself, but my H says it tasted bad - all bad. Not even like nothing, just bad. It started for him after 2 weeks, was full blown by end of week 4. He was getting RT on both sides of his neck. It lasted about 3 weeks after treatment finished.

This time, it isn't so bad. He is about 12 treatments in, just on the one side, and his taste is ok still.

Emend was the only thing that worked for H's nausea. Compazine, Kytrol, etc. etc. not enough! A miracle drug indeed. They can also give you drugs via iv if you are really having trouble. Ooh - they just gave him a kytrol patch that has helped too.

H could taste vanilla stuff the longest - he did vanilla ensure shakes almost exclusively by the end.

I hope you feel better!

________
Angie
Husbands history: Stage I sore on right tongue, removed by surgery 7/06. In 1/08, noticed small inflamed node in right neck. Radical neck, 8 positive nodes, cisplatin and rt for 6 weeks. 12/08, large tumor in left neck. Needle biopsy positive. 2/09, begin taxol and carbo and more rt. Rad neck to follow in April.

I never got nauseated because I had surgery on my esophagus and it kills nausea forever. The bad taste is a constant with me and probably others in here. I also get overfull with out much food at all. Even insure overloads my or so my stomache thinks so. We're talking 1 bottle of it. Maybe someday we will figure out our problems and how to cure them.

well.....now H has moved past the nausea part. Everything just tastes bad and we're doing Vanilla Ensure in the peg. 8 days of treatment left, he's miserable, of course, so we'll just use the peg until he starts to improve. As with you Jim just a little ensure makes him feel overloaded.

Cheryl

My thoughts are with your husband and he gets close to the end of treatment. I wanted to quit I hurt so bad and the machine kept breaking down. I was just miserable and depressed. I got a swift kick from some of my buds here and finished and I am glad that I did. Tell him to hang in there, it will get better soon.

Patty

Cheryl,

I understand the need for the Peg but do make sure he still uses his swallowing muscles because they will shut down in short time without use.

That's what the doctors told us too. he still needs to try and drink or the swallowing muscle will stop working.
The dietician told us that the toffee ensure was a popular one with ENT patients. She said that for some reason toffee and caramel flavour is tasted for longer. Martin started finding toffee salty but other patients seemed to survvie on it.

I just blended beef stew into a soup. It sure wastn't the best about the burning but it was different. Put it over heavily buttered bread in a soup bowl and enjoyed.

We're down to the last 7 days of RT....stuck in a hotel which hasn't helped tho better than the hospital. We've graduated to gravity feeding through the peg which is great as he can take more in over a longer period of time and can doze through it as the fatigue is overwhelming now. H is a big guy.....6'7", started at 228# is now at 208#. He's still drinking water and gatorade so swallowing is continuing. We were kicking butt before the taste went.....even managed to put country fried steak thru the food processor and then mix it with extra gravy over mashed potatoes and it slid right down. We'll get back there In the meantime, I drag my laptop to waiting rooms and read the posts so I can get all the tips I can - thanks everybody!

Cheryl,

Keep on truckin and before you know it lets pray this nightmare will be over.

Cecilia,

I come back to my favorite time saving, nutritionally balanced, high calorie meal substitute in yummy smooth and creamy OC Vanilla...Carnation Instant Breakfast VHC.

Martin was put on the PEG when his weight had dropped down to the same as mine and I am not big, but he is 6ft2 and I am 5ft5.
The PEG stopped him losing weight and took the pressure off eating. It help so much.
Good luck for the rest of the treatment. I hope he stops dropping weight after the PEG.

I drank alot of yoohoo throughout my treatment. Its very thin and I could still taste it. I would use caramel syrup in it for an added calorie boost. David's Carnation VHC is the best for balanced nutrition, but yoohoo does have some nutrients in it. Almost finished, hang in there!

5 days left....finally managed to get the gravity feed bags and that has helped immensely! Got far more calories and fluid in today than in the past two weeks. Chemo had to give him fluids yesterday as he was terribly dehydrated despite all the water and gatorade he was drinking. Now have a standing order for fluid at any time he feels it's necessary and I am doing slow drip of pedialyte and water as well through the tube. Going home for the weekend which will help. Then only 4 days next week. We're definitely into the countdown phase then wait a month for a ct scan. Still talking about surgery for at least one of the nodes tho. We are hanging in there.