Lack of saliva

I am now going on 16 mos post tx and I am having the same problem. It is very frustrating and uncomfortable to say the least. I keep water with me at all times. Biotene mouthwash is the only thing that helps to significantly moisten my mouth (temporarily). It especially helps throughout the night. I'd say my saliva is less than 50%. At this point, I don't know if it will improve anymore. I am on Pilocarpine (Salagen) 3 times a day. Sometimes I miss a dose but I don't really notice a difference one way or the other. Everyone's salivary glands respond differently, depending on the target and dosage of radiation. I had 70gy. I've read various reports stating that if a patient has had more than 30-50gy then the chances of the salivary glands recovering are not as high as patients that have had less than 50gy. I am very disappointed in the dry mouth side effect. I was not informed that it would be this severe and permanent. All I can do is keep the faith that it will improve and continue to try different things. Sorry this isn't much help. I just thought that it would be of some consolation to you by sharing my similar experience. Believe me, you are not alone! Let's not lose hope!

Evoxac
I'm sorry I mispelled the drug. It is Evoxac 30 Mg capsules up to three times per day. I will also tell you my saliva has gotten better each year. It did come up on an Internet search.

Keep the faith and let us know how you are doing.

suzhiles said:

Lack of saliva
That's a tough one. I'm 16 months beyond radiation, my saliva glands are about 25% as well, Salagen made me nauseous and all other "solutions" were not real solutions. But anything that stimulates your salivary glands is a plus as long as you brush and use an antibacterial mouthwash afterwards. I took to ice cream, but got a little tired of it. That's pretty much the bottom line for me.

Aside from soups and soft food, I don't eat anything that is not worth cleaning out my mouth for afterwards. So now I tell myself I can eat anything I like, but the truth is I can only eat foods that I am willing to dedicate time to cleaning out of my mouth and teeth afterwards. It's a pain, but, on the other hand, after Stage 4 cancer I'm still here.

Sounds silly or basic, but any and all liquids you can put in your mouth are good as is a water pik for taking care of the debris your saliva will not.

Temporary Relief
I was treated for nasopharyngeal cancer in 1998. Since then, I have carried a bottle of water. My dry mouth condition has probably gotten worse. I ate my last steak over 10 years ago. My taste buds has not really returned.

When going shopping or other short visits, my temporary solution is the use of that Oasis mouth spray. That way, I can leave my bottle of water in the car. It feels oily and I really did not like the taste. I finally emptied the contents and refilled it with water. The spray mist works great. People used to comment that I drank a lot of water, now they stay away since they think I have bad breath. LOL. Just kidding! That tube fits in my shirt pocket. For the lady, it fits in your purse. Biotene also has a mouth spray.

My wife knitted a small pouch with a belt loop. I carry my 12 ounce bottle of water on my side adjacent to my cell phone.

We travel 4 or 5 times a year. There is a little known TSA rule that you can carry more than three ounces of water. I used to carry that rule and a doctor’s statement. I made it through 11 of 12 times, but it was such a hassle. I now just empty the bottle and refill it on the other side of security. The doctor’s statement can be used where ever water is prohibited. If you have any problems, just quote the American with Disabilities Act. There probably is nothing in it, but it will be difficult to challenge. I have never been denied access anywhere.

Chap stick is okay for my lips, but it creates problems. My lips soon turn white or the color of whatever I ate. Now, I frequently carry a wet handkerchief in one of those half sandwich bags. I use it to wipe and moist my lips.

I realize you were looking for a more permanent solution. I hope you do find it or your situation improves.

I now consider my set backs as minor and continue to enjoy life. Sometimes I think about it, but it soon goes away. There are others with more severe disabilities. We are still alive. I think I’ll have a medium rare prime rib tomorrow. Ha ha.

BugHunter said:

carpet mouth
I have found that chewing gum helps keep the glands active for longer than tic tacs or mints did. I think it just keeps them stimulated for longer. I am 19 months post tx and still have to keep my trusty water bottle close by. My cousin is almost 7 years post and still keeps one close. I wonder if it becoming more of a habit/crutch in my life??

BILL

carpet mouth
My dentist recommended all chewing gum with xylitol because it exercises my jaw and thus may produce what limited saliva I can still produce without the sugar and, as a consequence, tooth decay. I'm 19 months post tx as well and water helps more than anything else. Not a habit or a crutch, just the way we have to live now while being thankful we're still here. Can't do anything mint-flavored because of lack-of-saliva sensitivity. Used to be able to eat raw jalapeno peppers and win hot sauce eating contests at Thai restaurants. Those days are definitely over!

Suz

BugHunter said:

Our new "normal"
That is how I describe my life now. If my glands never progress any further, I am good with that as it means I am still alive to gripe about it! LOL
Early on in my recovery/healing I realized I would never be the way I was prior to treatments and had to adjust what was "normal" in my life. It was never going to be what was normal before so I had to decide what normal was going to be.......

This probably only makes sense to those of us who have been through treatments and our caregivers.

BILL

P.S.
I never claimed to be normal to start with!

Our new "normal"
About 6 months after the radical neck dissection surgery, I was still in major whine or at least whimper mode. My dentist--who works hand-in-glove with my radiation oncologist--kindly reminded me that the person and treatment which led to all my "suffering" also saved my life. I shut up. About the same time, I started seeing a superb pain management doctor who said much the same you did, but in a different way and it slowly brought about a huge sea change in attitude toward the illness and the way I have to live now as a result of the cure.
Now, 18 months later, although still beset with the usual challenges that go with post-radiation and neck surgery, I am now working on "expanding" upon the new normal at every opportunity. Thanks for sharing your positive approach to the new normal.

Suzanne (not exactly normal before radiation therapy either!)

JoyArt said:

HawVet dry lips
I had tongue cancer, stage 4 and its been 31/2 years out from radiation and chemo. I have very little saliva which is affecting my teeth and makes the texture of many foods taste and feel terrible. My lips were very dry and I used a chap stick called Arizona+Sun Lip + Kist. Its yellow with blue writing. It was my favorite after trying many. Recently my lips and tongue started burning and an ex-cancer patient told me about Aquaphor Healing Ointment. Its wonderful. I understand many cancer patients use it for radiation burns . Its an Advanced Therapy for dry, cracked, or irritated skin. You might try thaton your lips. I also use Orajel Dry Mouth Moisturizing Gel in my mouth and especially before bedtime. I wake up several times a night with dry mouth and this is the best I've found. There are other brands but I don't like the taste. I also use TheraSpray Mouth Moisturizing Breath Spray by Omni. Its a really nice minty spray that freshens your mouth. You need to orderit over the internet. I do have a phone # 1-800-522-0800. All these thing are unfortunately temporary. I'm waiting for the medical field to do saliva glands transplants. Wishful thinking. I've also tried Salavan which hurt my stomach and Evocac sounds familiar. I'm not sure if I 've used it or not. I'll look it up.

Aquaphor
I had throat cancer and used Aquaphor in between radiation treaments. It is super although I've never understood what distinguishes it from Vaseline since the color and consistency seem to be the same.

As for the saliva transplants, I checked that out as well and found out on the internet they are just beginning to do them with animals. Really, but not a great comfort to us right now. Salavan didn't work for me any more than Evocac since both were created for dry mouth/lack of saliva conditions other than side effects of radiation treatment.

There is also something called Caphosol which is supposedly a saliva or artificial saliva substitute. It's expensive and requires you mix together a couple of ampules of solution together. Theoretically, if you do that and swish with the mixture so many times a day, it helps mouth, gums and teeth. Didn't work for me, but might for others.

One of the things we all need to realize is that when they developed all of these treatments to cure our various forms of oral cancer, they didn't exactly experiment on monkeys first and so didn't have a clue about the side effects of radiation with which we are all dealing.

Our physicians, who have not suffered as we have, are still on a learning curve based on patient feedback. They're job, as they saw it, was to save our lives. And I try to remember that every time I feel "deprived" or in pain due to the effects of radiation treatment, radical neck dissection surgery and being fired from my job because I had cancer.

We all should remember that when we feel a little deprived or low.

HAWVET said:

Dry Lips
JoyArt, thank you for the recommendations. Sorry for the late response, but I went out of town for a week. My oncologist said my taste would return, but has not. Like you, I do have very little saliva and without that taste, am eating to survive.

I will try those different products and maybe I can find something that works better. Maybe the medical field will find a way to have our saliva start production again. It is nice to be able to laugh about our handicaps. This positive attitude helps keep us going.

Dry Lips / Mouth
I am about 18 months post-treatment. Saliva production for me is about 25% of what it was before.

I chew gum constantly. Sugarless with Xyltol (spelled a variety of ways very similarly). Xyltol is alleged to stimulate saliva production.

Bottle of water everywhere you go. I get these little plastic bottles shaped like a flask of sorts at a runners shop.

Evoxac does help. However, I am not one to take drugs. I am concerned about the long-term side effects. Don't know what I will do long-term.

Does anyone else 'feel' as though that when you head is angled/tilted forward/down - you produce more saliva????

The Biotene products are all great, but tough to find - need to order on the internet (especially the gum).

I am chewing a new gum that I like - Trident Xtra Care. Seems to last quite a while. Too, they have wintergreen which I like the best.

I run/jog - I carry a water bottle with me and chew gum (feel free to insert your favorite joke about walking and chewing gum at the same time LOL) while running. I am a 'mouth breather' and my mouth will easily dry out. Any one else? Solutions? Too, I have almost choked on the gum several times.

Taste - I would put that at about 50% of what it was before. Can't handle 'hot' (temperature) things, spicy things, acidy things, carbonated drinks, ... It is better than it first was, but these things still hurt a bit. When I first got done with treatments - I could even sip a hot cup of coffee. I had to let is cool or put ice in it. Now - I can sip it right away. I can handle more of the spicey, carbonated, acidy things, but they all have improved a bit over the last year.

I really miss the 'pow' or 'bam' (to coin phrase from a famous chef) that a strong cup of coffee used to give me. Starbucks 'Sumatra' is the boldest most flavor filled coffee I found that I like.

We all learn as we go and adapt. Best to everyone.

stevelfun said:

Dry Lips / Mouth
I am about 18 months post-treatment. Saliva production for me is about 25% of what it was before.

I chew gum constantly. Sugarless with Xyltol (spelled a variety of ways very similarly). Xyltol is alleged to stimulate saliva production.

Bottle of water everywhere you go. I get these little plastic bottles shaped like a flask of sorts at a runners shop.

Evoxac does help. However, I am not one to take drugs. I am concerned about the long-term side effects. Don't know what I will do long-term.

Does anyone else 'feel' as though that when you head is angled/tilted forward/down - you produce more saliva????

The Biotene products are all great, but tough to find - need to order on the internet (especially the gum).

I am chewing a new gum that I like - Trident Xtra Care. Seems to last quite a while. Too, they have wintergreen which I like the best.

I run/jog - I carry a water bottle with me and chew gum (feel free to insert your favorite joke about walking and chewing gum at the same time LOL) while running. I am a 'mouth breather' and my mouth will easily dry out. Any one else? Solutions? Too, I have almost choked on the gum several times.

Taste - I would put that at about 50% of what it was before. Can't handle 'hot' (temperature) things, spicy things, acidy things, carbonated drinks, ... It is better than it first was, but these things still hurt a bit. When I first got done with treatments - I could even sip a hot cup of coffee. I had to let is cool or put ice in it. Now - I can sip it right away. I can handle more of the spicey, carbonated, acidy things, but they all have improved a bit over the last year.

I really miss the 'pow' or 'bam' (to coin phrase from a famous chef) that a strong cup of coffee used to give me. Starbucks 'Sumatra' is the boldest most flavor filled coffee I found that I like.

We all learn as we go and adapt. Best to everyone.

Biotene products
As a suggestion, check with your Dentist to see if he has a Biotene salesman/source. I get the Biotene alcohol free mouthwash from my Dentist for $30 per gallon which lasts me for at least 6 months. Perhaps yours can get that and other products as well.

Hang in there, it will get better. JK