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eating and swallowing

txlas
Posts: 2
Joined: May 2001

I had total laryngectomy and neck dissection 11/1/00 then 7 weeks of radiations both sides of neck. I am unable to eat or drink anything othr than ensure and vamilla milk shakes I've lost 20 pounds that I couldn't afford to lose. Have dry mouth also, anyone tell me when you can eat or taste again I do drink water all day. There are no support groups for throat cancer in Lubbock Tx anymore. Help thanks.

snwflk
Posts: 16
Joined: Nov 2000

Your taste buds will return in increments over the next 3 months. My taste for sweets was the first to return. By that I mean I was able to detect the sweet element of certain foods w/o the effect of the other ingredients. Take advantage of this time to explore this effect because it will never be experienced again (we hope) once the effects of radiation wears off. Can you tell I developed a fondness for some foods...especially ketchup (includes Karo syrup) & vanilla flavored Ensure? Now I can take or leave the ketchup and the vanilla Ensure is...is....
As for the dry mouth, that will improve but never really go away over the next 3 years. The salvia glands are irrevocably damaged so don't waste your time or money on Salagen pills. Of course some people may argue this point, but come on, think about it. How can something that is permanently destroyed be fixed by a pill? I finally figured this out after 3 yrs and some very dry weeks, pill or no pill. Sure it may help some people physiologically but why waste the money. A water pic, floss, Biotene toothpaste (some don't like) after every fricking meal are your best bets. Teeny, tiny sips of milk/water/creamy soups with the drier type foods will enable you to eat a greater variety of foods.
Above all look at this as an opportunity to start a new life with different interests, tastes and, and...well just everything new.
Best of Luck,
Marie

dkeats
Posts: 11
Joined: Oct 2000

Hello,
I had radical neck disection one side and classic on the other with radiation following both sides (twice a day). They insisted that I have a feeding tube whch I know saved me. I was able to maintain my weight by using a prescription suppliment thru the tube 6 times a day. I had the tube for 5 months. I had it taken out this past December which was probably a little to soon, even though I finished radiation in September. I had trouble maintaining my weight without it becuase things tasted awful plus the dry mouth. It was probably February before I could eat anything much besides chocolate milkshakes and cheese! Things still don't taste real good but I've added a few new things to my menu. I actually had radiation in this area seven years ago for the same cancer so they tell me that I've had more permanent damage this second time around. The first time I completely regained my taste and didn't have the dryness in my mouth for more than a month after treatment. I haven't found anything except drinking water all day to help the dry mouth. I use Oral balance gel at night under my tongue and between my cheeks and gums to keep from waking up all night for water. It helps alot. I've also started physical therapy about three weeks ago for the stiffness and it has been remarkable! I can now turn my head instead of my whole body. If there's anything else I can tell you, please let me know. I'm approaching the 1st anniversary of my surgery and feeling more like a normal person every day. You might want to ask about the feeding tube...it's easy to have put in and isn't too bad to deal with considering how much it helps. If you don't stay strong, you can't fight as well. Good luck to you...I know you can do it!
Marilyn

P.S. My cancer was actually in my saliva glands so I had to have all but one taken out so that's why I'm so dry. First time around they only took out one so the others were able to take up the slack.

jettax
Posts: 1
Joined: Jul 2001

I had chemo and radiation finished in 04/05/01 and can't eat, drink, swallow, or taste either. I had a peg tube placed in my stomache before even starting treatment and put twocal (like ensure) through it. I can't taste either. Mouth is dry. I hear this takes months to get better, but I would like to hear any tips on improving the swallowing. The peg tube prevented too much weight loss.

dkeats
Posts: 11
Joined: Oct 2000

Hi,
Your message sounds just like me. I kept my feeding tube for 3 months after my treatments ended. I probably had it taken out too soon because I had trouble maintaining my weight because I couldn't eat anything either. It has now been 10 months since my last treatment and I am still very limited as to what I can eat. I have found chocolate the first thing I could taste. My doctor told me that was because it is a simple sugar and doesn't require much saliva to break it down. He says the chemical reaction of saliva is what causes things to taste the way they do. With limited saliva, that reaction doesn't happen. I could also eat mild white cheese but I have to take a drink of water with every bite to be able to swallow it. Sounds gross but it's not really that bad! I can now eat pork loin, chicken, french fries (not potatoes), raw cookie dough and McDonalds fish without the bread and tarter sauce (bread is a killer!). And of course, anything chocolate. Right now I'm on a "Ding Dong" kick. I still can't eat anything with tomatoes, no fruit, pasta, or anything with citric acid. I carry water with me wherever I go and at night, I put Oral Balance artifical saliva gel under my tongue all the way back to my jaw bone. That really helps with sleeping. I also found that a kids "sippee cup" works well to just take to bed with you so you can lay it right in bed with you and don't have to worry about reaching up and spilling your water. I also learned that it it much easier to drink out of a bottle like the bottled water comes in and not use a straw. The straw really created a swallowing problem for me but it took awhile to figure that out. I only drink room temperature water, too because cold water is hard to swallow...I think it restricts the thoat somewhat. I forgot to mention that this is the second time that I've had treatments. The first was seven years ago and I recovered almost all of the taste in about six months. This second time probably did in some taste buds for good but I'm sure you'll be getting better soon. This doesn't sound all that encouraging, but it's really not all that bad. The worst is behind you can you are getting better each day even though it doesn't seem like it right now. Find a couple of things you can tolerate and eat them until you see them in your sleep. My husband has a fit because I eat so much chocolate and don't gain weight...if he looks at it, he gains! I promise it will get better.
Marilyn

smithd48471
Posts: 2
Joined: Jul 2001

Hi, I have been on the feeding tube for over a year know. I have no taste buds or sylvia gands due to radiation on both sides of the neck and straight on the throat area. they say I will never get my syliva glands or taste buds back. All I can do is to drink water. My mouth is constantly dry. I wash my mouth out with Act mouth wash, cinnamon flavor only one I can handle, alcohol free. It helps a little. dave

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