Dry mouth

lightpulse

I'm sure most of you who has/had head and neck cancer suffer from dry mouth due to radiation treatment. I'm no exception and wondering if my dry mouth is as severe as from the norm for most of you. Don't have dry mouth after radiation? Tell us why you think this is. I would think irradiation of the salvary gland would severely impact saliva production.

I've been told that dry mouth is for life. Is this true? Any of you have had any improvements? How long did the appearance of improvements take? Are there anything you did that improved dry mouth?

I'm bordering on malnutrition because I lost so much weigt. 182 lb. pre radiation to 148 lb. now and not because of nausea from kemo. It's such an ordeal to consume dry and semi-dry foods. When I chew these kind of foods, they turn into like a bread dough, stick to my teeth and gums and impossible to swallow unless I get a swig of some liquid. Good thing my taste is slowly coming back.

Foods that I love like breads, cakes, candy, potatoe chips, nuts etc. I can't enjoy any more. How did you expand the varieties of dry foods you can enjoy?

What strategies and methods do you think are available to regain a healthy weight and maintain it by adapting to healthy diet and foods?

Thanks, Tak...

phrannie51

What?? No ice cream??

Actually, my diet changed to a more healthy one, simply because sweets had no taste for a long time....took about 3 years for my sweet tooth to redevelop.  But I gave ice cream a try a couple times a week to "check up" on the progress.  I ate, and still eat a lot of soup....and on of fave things was soaking well-buttered custy bread in my soup...or dipping into my soup so it gets some liquid soaked into it.  Crackers, chips....those need added liquid still for me (going on 5 years out)...unless you soak them in something.... I love nuts....and am fully willing to have my water bottle handy in order to eat them.

Add lots of butter to veggies....if you can eat salad, add extra dressing.  You don't say what you can eat...I'll bet I can dream up a way to add enough calories to it to make it eatable and tasty.

p

lightpulse

I can eat anything wet

Hi p,

I can eat anything wet, especially anything soupy or stewy. My magic food = noodle soups, my favorite = pho. Love noodles and pasta, taste and texture + carbo for calories. The broth is the lubricator and wetting agent. When I chew noodles, it doesn't turn into dough like rice or bread. How about adding tahini to noodle soup? Sounds terrible but got the calories though. I haven't tried to make and eat it and don't think there is a recipe. What can you add to make me fat again?

Tak...

 

CivilMatt

post rads delights

Tak,

Dry mouth, lack-of-saliva, taste, no taste, awful taste, low (difficult) speech  are side effects many H&N members live daily.  All my afflictions from radiation have improved many times over in the last 5 years and continue today.

I was on smoothies for 8 months before my taste buds (suddenly) kicked back on. I would add nuts and oil to juice up the calories.  I was always trying everything and often. The H&N forum can offer advice, but the work is yours to figure out your path. Also, I belong to phrannie’s ice cream of the week club; it is a dynamic indicator of taste.

I have tried many, many dry mouth aids including coconut oil and I do find some relief in them. I am a big fan of xylimelts at bed time (they work for me).

I drink multiple glasses of liquids for meals. In a restaurant it is always big glass of sweet tea and water.  Water is my buddy.

My life of eating is fairly normal, I do still deal with dryness and a mouthful of food stuck to my teeth and gums, but you learn to pace yourself and be careful.

Many of us have found a buffet to be a good place to put on the feed bag.

Matt

AnotherSurvivor

I just complete 4 months post

I just complete 4 months post, and my status changes daily.  Some days better, some days less.  My current taste is weird.  I can taste many individual items but blend them together and I get nothing.  Also, the first taste of anything is pretty much it, it fades quickly thereafter.  BUT, I do pretty much taste everything,at least a little.  Most things taste good, tragically, beer is really foul right now, and wine is impossible.

Drymouth is more of a learning experience.  As Matt says, there are a great many products for the problem, some even work.  I have found I am getting more proficient at coping, working out how, and get thru long periods without noticing it.  I recommend Pur gum.  I was working yesterday and concentrating on my task and managed to go five hours on the same two small pieces.  As my general health improves I notice the annoyances less.  

I would suggest you learn patience.  I thought I would be back to normal after two months. Now at four months post, I hope some of my annoyances  see real improvement in two more months.  My oncols say I'm doing well, and probably in-line for a year of good recovery.  I've learned they are more right than I am.

JKELLY0409

Me too!

I finished chemo and radiation treatments the week of Thanksgiving. I went from 174 to 108 lbs. I lived on ensure alone for almost 3 months.  In addition to dry mouth and all taste loss, the pulled my bottom teeth prior to radiation because my enamel was weak.  I am still working on getting dentures but have been eating soft foods for almost a year. I am almost 6 Mon post treatment and have maybe 25% taste and saliva back. I can taste super sweet or salty that's it. I eat a lot of pasta and sauce, carnation breakfast, cream soups, eggs, potatoes and ice cream to try and gain back some weight. I used to wake up every hour because I needed a drink of water, now usually just once or twice. I always have water with me because my mouth gets so dry so fast. I don't enjoy eating at all and eating out is the worst (except buffets!)but  I am hopeful that these side effects will eventually go away. each week I get a little stronger and I am no longer losing weight or hair!

Kapital

dry mouth

My husband finished chemo and radiation 2 years ago for stage IV tonsil cancer. He says that over that two year period his taste and saliva have very slowly improved. He guesses that his saliva is about 50% improved and his taste is about 60% of what it was. He lost 75 lb with treatment and has probably regained 15 of them. He looks good and eats healthier than he did prior to treatment. He does like ice cream and "moist" type of foods now. He doesn't eat dry, bready foods much, but when he does he drinks a lot of water with it. He is also a fan of Xylimelts at night to keep his mouth moist and sugarless gum during the day. Of course he still has a water cup with him wherever he goes, although I have noticed that he can go a longer time between sips than when treatment first finished.  It's a trial and error type of situation that you will figure out as time passes. Good luck with your recovery. 

murielk88

dry mouth

Had a nasal pharyngeal tumor stage 4 +., had a serious inhuman treatement of  33 radiations everyday and two chimos, I refused the 3rd one.

A year to this day, I am free and clear of the tumor but was left with no hair or a little on each side of my head..turns out the only disastrous consequence of this is dry mouth, but after one year i can see a bit of improvement , at leats 20% of salive do come back, and i was told my salivary glands would not work again because i had such a rad. treatement.

To improve your diet, because i still cant have bread, chips, all the goodies from the past are banished because it get stuck in my teeth and i cant swallow.

The solution is to cook or have everything cooked with olive oil, it does helps a lot the palate and the mouth, it greases it! I Cook a lot of fish with olive oil, with everyday an avocado for hair and skin, i cook also my meat with olive oil it makes a big difference in the mouth as well as eggs, under forms of omelette, because hard bolied eggs are hard to digest and gets moochy in my mouth.

Honyedew and cantaloupe are very good and helps alot with the factor no saliva.

But if you pretty much cook everything with oilive oil, it makes it possible for us to eat everything.Dont be afraid to pour a lot its the healthiest thing ever for the body. I dont drink coffee anymore, it does drys out my mouth, as well as red wine or cigarette,..so stay away from all this.

Unlike tequila and vodka, lol, these dont dry up your mouth if you need a litl drink sometimes.

Have a proper hygiene for your teeth, i go every month to the dentist to check if i dont have a cavity, no saliva will do that to us. And a teeth cleaning every 4 months.This is extremely important, I keep hoping the saliva will come back, this 20 % was inexpected, 3 months ago, i could not go out anywhere without a bottle in my hand, today i can go for a hike an hour without any bottle, but I carry with me a life saver! This french water sprey in a small bitlle, in my back pockt when i hike, and its just water spray in my mouth that helps me so i can exercuse, and i dont need to carry a dam water botlle 24/7

hope everyone is good../ Muriel

 

CivilMatt

murielk88 said:

dry mouth

Had a nasal pharyngeal tumor stage 4 +., had a serious inhuman treatement of  33 radiations everyday and two chimos, I refused the 3rd one.

A year to this day, I am free and clear of the tumor but was left with no hair or a little on each side of my head..turns out the only disastrous consequence of this is dry mouth, but after one year i can see a bit of improvement , at leats 20% of salive do come back, and i was told my salivary glands would not work again because i had such a rad. treatement.

To improve your diet, because i still cant have bread, chips, all the goodies from the past are banished because it get stuck in my teeth and i cant swallow.

The solution is to cook or have everything cooked with olive oil, it does helps a lot the palate and the mouth, it greases it! I Cook a lot of fish with olive oil, with everyday an avocado for hair and skin, i cook also my meat with olive oil it makes a big difference in the mouth as well as eggs, under forms of omelette, because hard bolied eggs are hard to digest and gets moochy in my mouth.

Honyedew and cantaloupe are very good and helps alot with the factor no saliva.

But if you pretty much cook everything with oilive oil, it makes it possible for us to eat everything.Dont be afraid to pour a lot its the healthiest thing ever for the body. I dont drink coffee anymore, it does drys out my mouth, as well as red wine or cigarette,..so stay away from all this.

Unlike tequila and vodka, lol, these dont dry up your mouth if you need a litl drink sometimes.

Have a proper hygiene for your teeth, i go every month to the dentist to check if i dont have a cavity, no saliva will do that to us. And a teeth cleaning every 4 months.This is extremely important, I keep hoping the saliva will come back, this 20 % was inexpected, 3 months ago, i could not go out anywhere without a bottle in my hand, today i can go for a hike an hour without any bottle, but I carry with me a life saver! This french water sprey in a small bitlle, in my back pockt when i hike, and its just water spray in my mouth that helps me so i can exercuse, and i dont need to carry a dam water botlle 24/7

hope everyone is good../ Muriel

 

welcome

Muriel,

Welcome to the H&N forum, sorry that you are here and it sounds like you have had a pretty tough ride.  The 1 year clear is great, congratulations.  I do continue to see small improvements, but have learned to live with the different tastes, dry mouth and foods which get all moochy in my mouth.  I also love the Honeydew and cantaloupe, watermelon too.

People who have not been through with this do not understand but members to the H&N forum do.

I wish you good luck, very good luck.

Matt

AnotherSurvivor

Steamed food can be

Steamed food can be surprisingly good.  Raw broccoli is painful now, but steamed it retains the taste and is nice and soft, easy to chew, and doesn't teeth-stick..  Breaded and hard stuff can be a problem, but give me a chip with quacamole on it and down it goes.   And part of this seems to be mental.  When I am out and about and feeling good I experiment with lots of foods, and usually find I can get thru.  Sitting at home at the table feeling grumpy and nothing is good.

AnotherSurvivor

I am finding my recovery

I am finding my recovery process to be cyclical.  I seem to go thru the same issues in each cycle, but at a more 'refined' level.  Cycle 1 was simply getting to 2,000 calories every day, getting off of hydration-by-drip-line.   Cycle 2 was migrating off liguid food to 'real food'.  Cycle 3 has just started, and is a migration to 'varied food'.  Each cycle lasts a month or two, depending on the level of difficulty.  The early phase of each cycle much and truly sucks.  

Drivingdaisy

Dry Mouth

Hi there, I am 1 yr out from the end of treatment.  Kept My taste & smell through.  Actually was Recoverying Excellect by 3 months. Salivia, extreme taste......life was good.  But at the 6 month, everything changed.   My main Salivary that the worked got clogged due to Delayed Radiation.   it still fills when I eat but can't get out.  The others just shut down recently.  Also have problems with Sinus & Allergies 24/7 I have a ton of mucus.  Combined with extremely dessert Dry  mouth I am miserable.  I also developed a Sodium Low & can get water poisoning Very easy.   So I have to monitor every bit of water I take In.  Can NOT drink much of anything with a flavor but beer.  I did find a great water substitute...... Propel clear drink water with electrolytes & vitamins.  Really helps.  Also found Great NA beer.  It is such a trial & error, One Day at a Time Thing.  Each day can be different.  Nature of this type of Cancer.  Good Luck & hang in there.  Big Hugs...... Lisa

Kathryn in Houston

Coconut water helps. It's an acquired taste but it really helps dry mouth. Swish it around a lot before swallowing. It helped me.. I hope it helps.