Fighting Back Against 'Dry Mouth' .

DCH21
DCH21 Member Posts: 33
edited May 2013 in Head and Neck Cancer #1

Hello everyone.

I was wondering what those of you suffering with dry mouth are doing about it. ????

Pain pills and 'majic mouthwash' are doing very little for me.

 

It is very hard for me to believe that there is not some sort of lozenge on the market that would give some relief.

 

I know there is not a majic bullet but there must be some home remedy to ease the pain. ???

 

Any ideas ?

 

Thanks,

 

 

DennisSmile

Comments

  • meaganb
    meaganb Member Posts: 244 Member
    #2
    Stoppers4 works well. It

    Stoppers4 works well. It helps to keep the mouth moist & can be used as often as needed. I know there is a lozenge that some peopke use that contains xylitol which is supposed to help. Hope you find some relief!

  • Billie67
    Billie67 Member Posts: 898
    #3
    meaganb said:

    Stoppers4 works well. It

    Stoppers4 works well. It helps to keep the mouth moist & can be used as often as needed. I know there is a lozenge that some peopke use that contains xylitol which is supposed to help. Hope you find some relief!

    Xlimelts or gum with xylitol
    Might help. I use both of those things. Now the pain pills and magic mouthwash might actually be making things worse. Are you still in treatment? If you are then unfortunately you may have to keep taking those meds to keep you comfortable and try the gum or on top of it. Don't forget to hydrate with lots and lots of water. If you are dehydrated you will be more dry than you should otherwise be.
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    there is more

     

    Dennis,

     

    If you have no pain, no sores and no issues other than dry mouth, then Xylimelts work great.  I have given these puppies the work out and they perform well. I use them at night to sleep, I’ve used them on strenuous hikes, I use them to supplement my water bottle.  When I get into a dry mouth period there is very little relief from drinking water, I just keep drinking water and more water.  If I use Xylimelts I can temporarily break the dry mouth cycle.

     

    They work for 2 to 4 hours, I do two at a time.  I buy them on Amazon 3 packs of 80 each for a total of about $54 (ouch) shipping included.

     

    Every time I think I can do without them I can’t.

     

    I eat everything I want too, including spicy, sometimes spicy is a bit hard on the throat, but nothing to extreme.

     

    Matt

     

  • DCH21
    DCH21 Member Posts: 33
    #5
    CivilMatt said:

    there is more

     

    Dennis,

     

    If you have no pain, no sores and no issues other than dry mouth, then Xylimelts work great.  I have given these puppies the work out and they perform well. I use them at night to sleep, I’ve used them on strenuous hikes, I use them to supplement my water bottle.  When I get into a dry mouth period there is very little relief from drinking water, I just keep drinking water and more water.  If I use Xylimelts I can temporarily break the dry mouth cycle.

     

    They work for 2 to 4 hours, I do two at a time.  I buy them on Amazon 3 packs of 80 each for a total of about $54 (ouch) shipping included.

     

    Every time I think I can do without them I can’t.

     

    I eat everything I want too, including spicy, sometimes spicy is a bit hard on the throat, but nothing to extreme.

     

    Matt

     

    Thanks for the replies. I

    Thanks for the replies. I have many more issues other than dry mouth. I think I have a case of mucosotis also.

    Here are the side effects that I have. Hopefully with suggestions I can be helped along with others who read this.

    This is going to be rather lenghty and I type slow. I get timed out on this site if I take to long and when that happens evrything I typed does not get posted. I will have to hit submit every so often and than come back and edit my post to add more.

     

    I was DX with NPC cancer. I My treatment was 35 rads and 7 rounds of ciplatmum. I have been out of treatment for 3 weeks.

     

     

    About the fourth week in I was having touble swallowing and my doctor gave me a prescription for ' majic wash' ( Benadryal/Dexamethasone/Nystatin/water) 2 teasponns evry six hours.

    He also gave me Hydrocodone-APAP 7-5/15 ML Liquid

    10to15 ML by mouth or tube every 4 hours for pain.

    In order to swallow liquid or soft food I would take  my dose of majic wash and my dose of pain medicine. That would give me about a 20 to 30 minute window to eat and drink.

     

    That window is now down to less than 5 minutes. I have a tube and only use the mouth wash so I am able to swallow a few ounces of water a day to keep my muscles working. All other food and water gooooes through my peg tube.

     

    My mouth and throat are sore all day long.

     

     

     

     

  • DCH21
    DCH21 Member Posts: 33
    #6
    DCH21 said:

    Thanks for the replies. I

    Thanks for the replies. I have many more issues other than dry mouth. I think I have a case of mucosotis also.

    Here are the side effects that I have. Hopefully with suggestions I can be helped along with others who read this.

    This is going to be rather lenghty and I type slow. I get timed out on this site if I take to long and when that happens evrything I typed does not get posted. I will have to hit submit every so often and than come back and edit my post to add more.

     

    I was DX with NPC cancer. I My treatment was 35 rads and 7 rounds of ciplatmum. I have been out of treatment for 3 weeks.

     

     

    About the fourth week in I was having touble swallowing and my doctor gave me a prescription for ' majic wash' ( Benadryal/Dexamethasone/Nystatin/water) 2 teasponns evry six hours.

    He also gave me Hydrocodone-APAP 7-5/15 ML Liquid

    10to15 ML by mouth or tube every 4 hours for pain.

    In order to swallow liquid or soft food I would take  my dose of majic wash and my dose of pain medicine. That would give me about a 20 to 30 minute window to eat and drink.

     

    That window is now down to less than 5 minutes. I have a tube and only use the mouth wash so I am able to swallow a few ounces of water a day to keep my muscles working. All other food and water gooooes through my peg tube.

     

    My mouth and throat are sore all day long.

     

     

     

     

    For some reason I keep

    For some reason I keep getting disconneted from this site and I am losing what I am typing.

     

    I am going to look into that before I continue.

     

    Dennis

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
    DCH21 said:

    Thanks for the replies. I

    Thanks for the replies. I have many more issues other than dry mouth. I think I have a case of mucosotis also.

    Here are the side effects that I have. Hopefully with suggestions I can be helped along with others who read this.

    This is going to be rather lenghty and I type slow. I get timed out on this site if I take to long and when that happens evrything I typed does not get posted. I will have to hit submit every so often and than come back and edit my post to add more.

     

    I was DX with NPC cancer. I My treatment was 35 rads and 7 rounds of ciplatmum. I have been out of treatment for 3 weeks.

     

     

    About the fourth week in I was having touble swallowing and my doctor gave me a prescription for ' majic wash' ( Benadryal/Dexamethasone/Nystatin/water) 2 teasponns evry six hours.

    He also gave me Hydrocodone-APAP 7-5/15 ML Liquid

    10to15 ML by mouth or tube every 4 hours for pain.

    In order to swallow liquid or soft food I would take  my dose of majic wash and my dose of pain medicine. That would give me about a 20 to 30 minute window to eat and drink.

     

    That window is now down to less than 5 minutes. I have a tube and only use the mouth wash so I am able to swallow a few ounces of water a day to keep my muscles working. All other food and water gooooes through my peg tube.

     

    My mouth and throat are sore all day long.

     

     

     

     

    How dry I am....

    Hi Dennis,

    You can aliviate the time out issue by composing your post in MS word and then copying and pasting into the site. Also, check your internet settings. You may have it set to time out after a certain amount of time without activity. 

    I'm out three weeks from treatment as well and experiencing a similar situation. I have liquid Oxycodone (every 4 hours) and Magic Mouthwash and I gargle/wash my mouth with the baking soda/salt/l - glutamine rinse 6-8 times a day.

    I'm hydrating and feeding via a PEG and sipping water all day to keep those muscles working. I do need to get to soft foods to work those throat muscles more but I'm not there yet due to the pain. My throat is doing much better but the burning in my mouth and tongue is pretty bad. I have dry mouth (especially after a bit of sleep). I have to sleep in a recliner sittng up. If I can get to the point of lying down on my side in a bed the open mouth will not be an issue. 

    The recovery phase is as brutal as the last few weeks of treatment. The last few weeks have basically been a blur. I am beginning to notice some improvements but they're not earth shattering and come very slow. I have the xyliments but they burn my mouth for now. They did work early on and I imagine they'll help once I can use them again. 

    All I can tell you is what I'm doing and that's trying to stay ahead of the pain as much as I can. Hydrate through your tube every couple of hours if you can... It helps. I also have a product from Biotene that's been helping. "Oral Balance" It's a gel you put on your tongue and spread it around your mouth. It has helped the dryness as well as the bad taste in my mouth. Check your gums and the inside of your mouth for white patches. It could be thrush. I started to see a bit and I contacted my team. They said to start Nystatin again. Just started this morning. 

    Hang in there Dennis... that's all we can do. Have faith it will get better!

    "T"

     


  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    are you thirsty?

    Dennis,

    It might be too soon for Xylimelts, you are still taking on multiple side effects.

    I blew through a 6 pack of Magic Mouth Wash (and swallowed every drop) so I know what that is about.

    Fresh out of treatments my mouth would be as dry as the Sahara when I woke up.  Keep rinsing, drinking water and medicating until you get out of this area.

    Today I had a 3 hour (talking) meeting and I popped 2 Xylimelts before it started and had over  ½ of glass of water after the meeting finished.  Without the Xylimelts it would have been 3 glasses of water easily if not more.

    Good hydrating,

    Matt

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #9
    dry mouth

    I have been using Act Mouth Wash for Dry Mouth and they now have ACT Lozenges for dry mouth and they help. I have found them at Walgreens with the Mouthwashes.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    DCH21 said:

    Thanks for the replies. I

    Thanks for the replies. I have many more issues other than dry mouth. I think I have a case of mucosotis also.

    Here are the side effects that I have. Hopefully with suggestions I can be helped along with others who read this.

    This is going to be rather lenghty and I type slow. I get timed out on this site if I take to long and when that happens evrything I typed does not get posted. I will have to hit submit every so often and than come back and edit my post to add more.

     

    I was DX with NPC cancer. I My treatment was 35 rads and 7 rounds of ciplatmum. I have been out of treatment for 3 weeks.

     

     

    About the fourth week in I was having touble swallowing and my doctor gave me a prescription for ' majic wash' ( Benadryal/Dexamethasone/Nystatin/water) 2 teasponns evry six hours.

    He also gave me Hydrocodone-APAP 7-5/15 ML Liquid

    10to15 ML by mouth or tube every 4 hours for pain.

    In order to swallow liquid or soft food I would take  my dose of majic wash and my dose of pain medicine. That would give me about a 20 to 30 minute window to eat and drink.

     

    That window is now down to less than 5 minutes. I have a tube and only use the mouth wash so I am able to swallow a few ounces of water a day to keep my muscles working. All other food and water gooooes through my peg tube.

     

    My mouth and throat are sore all day long.

     

     

     

     

    First....

    you're just barely out of treatment, and the two week misery after treatment isn't in stone....some of us had pain for longer than that.  Are you sure you don't also have a case of thrush bubbling in your mouth along with the other misery?  I kept getting it back for 3 or 4 months after treatment ended, and thrush is like the pain icing on the cake.  Look for white patches, but sometimes there aren't any.....but maybe ask the Onc for a script of Diflucan to have on hand.

    I am a Stoppers 4 girl for the dry mouth....I tried a lot of other things but had the best luck with it.  It can be ordered from drugstore.com.

    p

  • nick770
    nick770 Member Posts: 195
    #11
    Hi, I have to throw in my

    Hi, I have to throw in my endorsement for xylimelts. I keep them with me most of the day.

  • MICH4EL
    MICH4EL Member Posts: 73
    #12
    Cevimeline

    I am taking Cevimeline pills by prescription from my dentist and I can tell it helps increase saliva.  Maybe that will help.  

  • metro22
    metro22 Member Posts: 16
    #13
    Salagen

     

     

    Pilocarpine  with a brand name  Salagen is an eye drop but also used for treating dry mouth with typical dose of 5mg. Do a search to find out more information. One suc h page is here

     

    Check with your dentist  or Onc. I learned about it from a radiation onc.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #14
    Nose Strips

    I've had the most trouble with dry mouth when I sleep. I wake up totally and painfully dry from breathing through my mouth. Breathe Right strips (I use the generic WalMart brand for 1/2 the $) work great! 


    "T"

  • phrannie51
    phrannie51 Member Posts: 4,716
    #15
    fishmanpa said:

    Nose Strips

    I've had the most trouble with dry mouth when I sleep. I wake up totally and painfully dry from breathing through my mouth. Breathe Right strips (I use the generic WalMart brand for 1/2 the $) work great! 


    "T"

    The nose strips worked wonders for me, too

    T.....when my mouth was sore and would get so dry at night.....waking up was a miserable time.  I used them for months after treatment was over.  Being able to breath with your mouth closed keeps it so much more wet.

    p

  • cadharose
    cadharose Member Posts: 52
    #16
    I've been using Biotene

    I've been using Biotene mouthwash and toothpaste. I think the trick with the Biotene mouthwash is not to rinse your mouth with water after you use it. I was doing that until recently because that is what I normally do when I use mouthwash. Finally read the directions and did a little looking on the internet and realized not to do that. Just spit it out and let the enzymes continue to do their thing. Does provide relief for a few hours, and the water that you drink in that time period tends to lubricate your mouth instead of just instantly drying. Also, using it at night before bed and letting it work overnight should help.

  • Sheilarhc
    Sheilarhc Member Posts: 46
    #17
    Salagen

    Salagen works wonders for me.  I take one 10mg tablet every 4 hours.  I call them my happy pills J

  • DCH21
    DCH21 Member Posts: 33
    #18
    Sheilarhc said:

    Salagen

    Salagen works wonders for me.  I take one 10mg tablet every 4 hours.  I call them my happy pills J

    Howdy folks!Thanks again for

    Howdy folks!

    Thanks again for the replies. Sorry I am just responding but I had an emergency out of town.

    Well things have taken a dramatic turn for the better. I woke from dozing about 4 am this past Monday with a BAD case of dry mouth and headed for the kitchen to get a sip of water to swish around in my mouth. For the heck of it I tried swallowing it, anticipating the pain. To my joy it went right down the hatch with hardly any pain at all.

     

    I am now able to swallow and eat soft foods. I don’t know how long my good luck with this is going to last so I am eating like a pig. I don’t care what the food or drink tastes like, I am eating/drinking it! It still hurts a bit but at least I can get it down.

     

    Back to my original question.

     

    I was trying to find out if there was something on the market that would ease the pain of swallowing just a bit. I tried Biotene and so forth but it did no more than a sip of water would do. It would wet my mouth but if I swallowed the pain would be off the charts. I spit it out just like I did sips of water. At the time I started this thread I was hoping there might be some home remedy that might ease the pain of swallowing just the tiniest bit in order to at least get some water down without cringing in pain.

     

     

    Anyway, I hope all who read this are pain free and are on the mend!

     

    Dennis

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