Having trouble with no saliva

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still-here
still-here Member Posts: 3
edited January 2016 in Head and Neck Cancer #1


Hello, I am looking for help please.


 


My salivary glands were burned away in what was considered "stone age" radiation 18 years ago, I had a stage 4 tumor at the base of my tongue and received radiation twice a day for 8 weeks. It metastasized onto my carotid artery and I had a radical neck dissection. I lived and the cancer was eradicated but it was a lot. Now 18 years later I have lost most of my teeth due to stomach acids (I take omeprazole) so live on liquids as the lower jaw was too perforated to sustain pins for implanted teeth.


A couple of years ago I developed a cough that seems to come and go with the seasons but now it stays and I was diagnosed (I believe for want of a better answer) with asthma. I didn't believe this as I had walked quite a ways uphill to get to the office and was not out of breath ... at any rate I was put on inhalers which seemed to help. Now they no longer do and I went through months of not sleeping and became a crazy person.


A highly regarded doctor then suggested I try Robitussin night time cough medicine before bed. This works great and I finally sleep which is so wonderful but now after over 14 weeks of nightly dosing myself I feel somewhat hazy and often clumsy during my waking hours. My moods are pretty dark too. I realize I can stop taking it but will I sleep? And can I continue to take it with no ill-effects.


I should add that the reason I believe I am coughing is that normal mucous is coming down but there is no saliva to thin it as it passes down my throat so coagulates there. I often will hack up an almost solid bit of plastic-like mucous and then am OK until that builds up again.


I have searched and searched for anyone else with no saliva glands but had no luck. Not just no saliva (this can often be helped) but no glands at all.


Can someone steer me in the right direction? Thank you for any help!


 


 


Comments

  • MrsBD
    MrsBD Member Posts: 617 Member
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    Saliva

    There are three bits of advice that helped me with dry mouth.

    Use a humidifier at night and even during the day if the humidity is low.

    Stay well hydrated. Nine to ten 8 oz. glasses of water was the amount recommended 

    Take Mucinex before bedtime. It helps thin the mucus.

    In addition,  I keep a glass of water nearby and take a little sip before trying to swallow.

    Hope this helps!

  • Barbaraek
    Barbaraek Member Posts: 626
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    No saliva..

    Yes, we are in this club too, though we are not as far out and have hopes some saliva will return. Rigt now my husband is enrolled in a clinical study using electirc impulses to stimulate salive (like acupuncture needles, but using little electric patches instead). Halfway through the study and not a drop of increase...but hope springs eternal.

     

    We also use a humidifier at night and push water, water, water. I wish I had more advice for you. Use of Xylitol gum, xlimelts, and Biotene oral care products may help. 

    Barbara

  • still-here
    still-here Member Posts: 3
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    MrsBD said:

    Saliva

    There are three bits of advice that helped me with dry mouth.

    Use a humidifier at night and even during the day if the humidity is low.

    Stay well hydrated. Nine to ten 8 oz. glasses of water was the amount recommended 

    Take Mucinex before bedtime. It helps thin the mucus.

    In addition,  I keep a glass of water nearby and take a little sip before trying to swallow.

    Hope this helps!

    Lack of saliva

     

    Thank you for your caring response MrsBD. I really appreciate it. I drink copious amount of water by the tumbler full all day but still wake at least every two hours throughout the night to drink more. I believe my mouth falls open and I start breathing that way. Tongue stuck to the roof of my mouth usually wakes me... I try to keep a hand up to my mouth to keep it from falling open but will start to search for some sort of chin strap that may be out there for folks who are mouth-breathers and snore!?

     

    I have tried a vaporizer and it seemed to work last year for me but this time around it is doing me no favors. I wonder if a humidifier is better?

     

    As far as the Mucinex, won't I fall into the same habit I have had with the cough medicine and be taking it every night? It can't be good for me, can it? I called the doctor who recommended it and got her assistant who's answer was, "There's worse things to be addicted to.". Need a new doctor, eh? I will check the Mucinex out though. I feel like a problem child. Thank you again!

     

  • armana
    armana Member Posts: 97 Member
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    Barbaraek said:

    No saliva..

    Yes, we are in this club too, though we are not as far out and have hopes some saliva will return. Rigt now my husband is enrolled in a clinical study using electirc impulses to stimulate salive (like acupuncture needles, but using little electric patches instead). Halfway through the study and not a drop of increase...but hope springs eternal.

     

    We also use a humidifier at night and push water, water, water. I wish I had more advice for you. Use of Xylitol gum, xlimelts, and Biotene oral care products may help. 

    Barbara

    No Saliva

    I am 13 months post radiation therapy for stage 3 tonsil cancer. I started taking salagen 3 times a day about a year ago and my saliva has improved gradually since that time.

    The radiation oncologist told me to take it for another year and then stop to see if saliva stops producing. Good luck

  • luv_freedom
    luv_freedom Member Posts: 49
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    no saliva

    I have the same issue as far as the saliva. I finished the radiation treatments on Sept 21st and still have no saliva. I wake up every two hours or so during the night with my tongue stuck to the top of my mouth and the end up my tongue numb. My oncoligist gave me a script to try. He said it was originally intended for the heart but was found that a side effect from it helped some people with dry mouth. The downfall is that only about 30% of the people that tried it had success. I haven't picked up the medicine yet but might be the same medicine that another person posted about. I don't remember the name of the medicine but I remember that I am to take it 3 times a day. I don't like the idea that I only have a 30% chance of it helping and I don't like the idea of sitting around sweating all day which he said was

    another side effect.  The salive issue is a real problem for me when eating food. I can't seem to gain weight because I have too much trouble eating and have to take a sip of water with every bite of food. The muscles for my tongue get fatigued because I have to chew so long since they removed most of my teeth during surgery. I only have 17 teeth now. It's not easy to chew food with just my front teeth. Doctor told me that it can take up to a year for the saliva glands that are still good to start working again. He said after a year what you have is what you have. Its very difficult having to sip water with every bite because too much destroys the taste of the food you just put in your mouth and too small of a sip you don't get the food moist enough to help get it down. Also I spend so much time chewing that my food gets cold before I can finish my meal. It sucks! LOL.

    And then the buldging muscles on the side of my neck that won't relax is another whole issue that I'm dealing with. I'm going to a message therapist now which helps some but not a lot. PT helps some but not a lot. I'm guessing that I'll have this issue forever as well.

  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    I resemble these remarks.

    Hi"Still-here",

    I'm happy to hear that you are still here.  Somehow, your treatment of 18 years ago sounds a lot like what I received 5 years ago, except that I received IMRT, which you likely did not.  IMRT didn't offer much help.  My salivary glands are gone now, and I experience all of the same symptoms that you describe.  I have no advice for you.  I don't use any medications, as no medications had provided me any relief.  I keep water with me always, night and day.  Eating is problematic, and requires a lot of liquids.  My sleep cycles are short, and I go through a lot of water at night.  I am well familiar with the sensation of waking with my tongue stuck to the roof of my mouth, which can sometimes be frightening. I do have all (almost all) of my teeth, but I see my dentists four times a year, and my dental hygiene might be best described as 'compulsive.'  I have nothing to offer except sympathy.  Hang in there.  It beats the alternative.

    Deb

  • still-here
    still-here Member Posts: 3
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    armana said:

    No Saliva

    I am 13 months post radiation therapy for stage 3 tonsil cancer. I started taking salagen 3 times a day about a year ago and my saliva has improved gradually since that time.

    The radiation oncologist told me to take it for another year and then stop to see if saliva stops producing. Good luck

    No saliva

    Thank you armana for your response. I have gone the salagen route as well and all it did for me was make me clammy and sweat. It brought no relief. I suspect the difference between us is that you still have a salivary gland or two whereas I have none so there is nothing to stimulate.

    I wish you the very best of luck with your return to a healthy life!

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Saliva & Stoppers4

    Having had radiation twice to the same location did a really bad number on my salivary glands. I would wake up at night every hour because my mouth was so dry it felt more like sandpaper than anything else. I tried all the stuff the doctor said to try and none of it worked for me, one day I was checking the internet and found a stuff called Stoppers4 dry mouth spray, and it has really been a blessing to me.

     

    Hope you get some help with it

    Tim

  • thennies61
    thennies61 Member Posts: 285
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    Wish I could help.But my

    Wish I could help.But my problem is most of the time I have to much slivia.Seems if I suck on a cough drop or eat something soft like bits of candy or even drinking coffee

    My mouth fills up.I am alwways trying to suck it up and swallow it.The prblem is that it effect my speech.Seems that it will make me slur most of my words and have enough trouble with the tounge flap not hitting roof of mouth at least till I can dentures with a thicker plate .

     

  • hawk711
    hawk711 Member Posts: 566
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    Wish I could help.But my

    Wish I could help.But my problem is most of the time I have to much slivia.Seems if I suck on a cough drop or eat something soft like bits of candy or even drinking coffee

    My mouth fills up.I am alwways trying to suck it up and swallow it.The prblem is that it effect my speech.Seems that it will make me slur most of my words and have enough trouble with the tounge flap not hitting roof of mouth at least till I can dentures with a thicker plate .

     

    This is a BIG problem

    don't know how to give advice, but Stoppers4 and other sprays help for a moment.  For me, water is best.  I have very dry mouth as you do and everyone just says, that's from the RADS.  I am encouraged when eating to use milk as a "thickener" when I eat to get the food down the windpipe more easily.  Water is too thin to push it all down.  I hope you are not lactose sensitive?

    All I can say is keep looking, keep trying new stuff, and keep coming back to the forum.  At some point, one of us will find the cure all for the problem of dry mouth.

    Sorry for your issue, but I do understand it.

    all the best,

    Steve

  • Kapital
    Kapital Member Posts: 52 Member
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    Saliva substitute

    My husband has found Xylimelts to be very helpful at night towards keeping his mouth moist. He uses 2 each night, one placed in each side of his mouth (between his inner cheek and gum line) just before bed. He says they almost make his mouth feel "normal" in regard to saliva at night. He read about them online and is happy he decided to give them a try. They are kind of pricey, but we found them at the local drug store. Good Luck!