I am looking for some insight into my desperation.

I am almost 5 months out of treatment and still can not take any food by mouth because of what I perceive to be the lack of saliva.

Basically, my mouth is as dry as the Sahara dessert. The only thing I have is a thick saliva that pools in the back of the throat. No matter how hard I swallow, that thick saliva seems to stay in the back of the throat. So when I try to swallow anything other than water or clear liquids, whatever I am trying to swallow just gets stuck in the throat.

My oncologist referred me to a speech therapist for swallowing exercises, but the exercises have nothing to do with what I see as a salivary problem. While I am faithfully performing all the exercises, my logic tells me this is not the solution.

Am I to expect any improvement in salivary function more than 5 months out of treatment?

Has anyone else out here suffered as I am?

I am still taking all nourishment via PEG. Obviously I am starting to wonder if I am to plan on PEG feeding the rest of my life.

I've tried Biotene and several other brands of moisturizing products for the mouth and throat. All they do is add to a pasty feeling on the roof of my mouth.

Frankly, I am getting a bit desperate and depressed by the lack of any return to some degree of swallowing function.

For some reason, my diagnosis and treatment did not append to my post.

SCC Right tonsil. IMRT 33 Erbitux 3 Carboplatin 3 2 nodes removed. Treatmwenr completed 11/4/08. CT scan clear.

I know there are some who are still getting saliva function at a year or so. I'm only 6 months out from treatment, so I can't speak from my own experiences since I'm not that far out yet, but I'm sure others will chime in about that. As far as the swallowing exercises, I would suggest doing them. They will strengthen your swallow reflexes and hopefully swallowing the thicker stuff will get easier. Since you've been using the Peg tube for all your nutrition, I'm sure your tongue and those muscles have weakened so you need to get them back up to par. Also, try seltzer water to cut the thick saliva. I never used it, but I know several on here have. Do salt water and baking soda mouth rinses as well. I drink milk with all my meals (unless I'm out to eat) because it is thicker than water and seems to coat everything well. I'm sure others will have some good suggestions. And don't get discouraged, it takes time and work but you will get there!

Stephanie I find that milk works better too. The only complaint I have with milk is that in the morning it seems to make the mucous worse, but after I have been up for awhile it is ok.

I can relate to the thick stuff and things getting stuck in it Charles. I have the same difficulty and I find that I have to clear the back of my mouth a couple of times while I try to eat. It makes staying home to eat a lot more comfortable than being around people, but it works.

Patty

Charlie,

Don't despare, it will get better. The thick mucus is most stressful, but you will have to learn to deal with it until it gets better. Everyone is different as far as getting rid of the thick mucus. It not only affects your ability to swallow, but also to taste. What worked for me was a suction machine beside my bed, which I used first thing in the morning and anytime during the day I felt I needed it. Then a solution of warm water with baking soda used a mouth wash about 30 minutes before I attempt to eat or drink anything. Believe me it does get better. Don't give up just keep in mind that tomorrow is another day and I will be better.

Best of Luck,
Hacklene

Charlie,

First off we CAN ALL respond differently to the same Tx so there is no set timetable for YOUR recovery. So you will recover when you will recover.

That said I saw (recognized) saliva and taste improvements at 4, 5 15 and 24 months post Tx. It doesn't mean that's when they improved, it's just when I realized something was better.

Hang in there and keep trying different foods and even beverages. I think carbonated drinks were the last thing that I could drink normally again and that was close to 2 years out.

I have had radiation twice and yes, I can relate to a mouth that is as dry as the Sahara. My solution has been water, water and more water to eat. I wouldn't be surprised if some meals I go through 3 litres of water to wash/push the food down.

For that thick yucky mucous, I get a good swig of pop. The acidity and fizziness of that seems to break it up a bit.

I am not expecting any saliva production so I will live with things as they are. Good luck.

Donna

I'm sorry you have to go through this, Charlie.

I am almost six years out of treatment and, like Donna, need a lot of water to eat and talk without my mouth sticking together. It took me a long time to accept that this was the new normal so I understand completely the frustration and irritation you are feeling.

I have adjusted now and eat moist foods. Foods which are difficult to swallow cause a sore throat even after this time. Taste is also a problem. In my case the front of my tongue, where the 'sweet' taste buds are, is less damaged and I find the sweeter vegs such as sweet potato, peas etc are more satisfying. Acidic is hopeless. Icecream is good.

So I recommend trying to eat foods which appeal to your new circumstances rather than your old favourites. Yes it is irritating but hopefully in time your saliva will return.

Sending best wishes as you continue to heal, with love from Helen

Charlie,
There is hope. I am 6 years out of treatment now, but at your stage I was still on a feeding tube and lived on soup and milkshakes for what seemed like a couple of years after that. Then slowly, but surely, things started improving. Now I can eat and enjoy anything from a steak to Mexican food to pizza to chocolate desserts and cookies and even nuts or popcorn. Of course I have to drink water to get them down, but hey, my water bottle is a part of my hand at this point. It goes everywhere that I go. The thick mucous goes away, and in time most of your taste will probably return. The only things that I cannot eat are very spicy foods...they burn the hell out of me and things like sticky candy bars are not worth the effort.
So keep hope alive...you are still a short-timer. Even with no salivation, life is good.

Take care,
Danny G.

My husband is 1 year from treatment and he still has problems. He started using saline rinse for nose and throat. He has a morning routine that involves flushing the mucous from mouth and throat flush/cough/spit.

From there he takes meds with yogurt and recently the doctor gave him a pill(Evoxac) to make his mouth water. He takes that 1 hour before eating.

The main thing is eat slimmy. Sweet potatoes, oysters, fruit, shrimp dripping with butter. He cant eat meat unless it is in soup or pasta.

He also has aspirations when swallowing water and thin foods.
He starts swallowing therapy next week.

Swallow often and keep working at the foods.
Its a frustrating process but you will get there!

Cray

Hi,

My boyfriend is 5 month after treatment and gets dry days and sahara days like you. His tongue then becomes brown, so he brushes it. So he gets bad days and very very bad days. He sips a lot of water when he eats and chips and a burger (which he has been craving) are out of the question for the time being.
His GP has prescribed him a saliva spray which is a short temporay relief. It's called Glandosane. It's not a miracle spray but it helps a little. He drank so much water last week because he was so dry, that he was sick water. So now he alternates when he is up and gets dry, a sip of water, a spray, a sip of water... Dig texas says the water bottle is part of his arm, Martin's bottle live in my handbag (oh and it's my fault if he forgets although now I don't forget) I am used to carrying a heavier handbag.
What also seemed to help a little with the mucus was a nebulizer. He used to nebulize 3 times a day with some saline solution and did feel a bit better after the session, unfortunately the nebulizer was on lone ans we had to give it back.
As for the swallowing Martin has a "slow triple gulp" especially with water, a mouthful of water takes three attempts to go down, but that doesn't seem to bother him too much now.
Otherwise, reading everyone else's email makes me hopeful that it might just get better.
Keep positive, it seems everyone heals at completely different speeds.
C

Has anyone noticed if they get Sahara mouth more when they move about or are active? If martin does anyrhing that involves a little effort his mouth goes instantly dry. Today we drilled some hole and screwed some things to the ceiling and he asked my to touch his tongue and it felt like I was touching dry sandpaper. The consultant says he never heard that. Do you get this?

Sometimes when we perform some activity, we breathe harder, esp through the mouth, which will dry it out in a hurry and we are distracted and forget to sip, which will keep it that way -- Happens to me a lot -- Consultant apparently has a lot to learn about all this...

Seems to be the entire United Kingdom needs Liz to educate them again.

Thanks. That makes sense. he has learnt to sleep with his mouth closed but I supposed he'll need to remember to sip more, when he does something.

Its like painting the Forth Road Bridge David,just when you think you have finished you have to go back to the beginning and start again.!!!!!!!!!

Cray,

How much of a difference in swallowing did the evoxac make. Were the side effects real noticable?
Thanks,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT, cisplatin X5

My husband has had very good success with Evoxac, no noticable side effects.

I had to have the nerve cut that controls swallowing and learning how to eat again was a very troublesome task. Keep doing what you therapist tells you to do and you will start noticing improvements. I still have a hard time swallowing but its better than being on that dam peg tube.

Charlie

If it was just a salvia issue, then swigs of water would ameliorate it. 5 months is way too early to "despair". Heck, I've been done surgery for nine months and can't eat and still rely 100% on a PEG tube. If you have not yet had a modified barium swallow test, you should get one. They are the gold standard for identifying what the swallowing difficulty really is as they show the entire process (or lack of it in my case - I have failed four MBS so far)
So get an MBS and keep up with the swallowing exercises. I know just how you feel and it's very understandable and all too real. Still the majority of head and neck cancer patients do regain swallowing and eating. The figure I saw on the OCF pdf is that only 10% need to have a PEG indefinitely. So the odds are with you.
charm