Does dry mouth ever improve?

catluver96
catluver96 Member Posts: 73
in Head and Neck Cancer #1

Hello,

 I'm curious, has anyone had dry mouth (and thickened saliva) get better in time? (None of my doctors have said anything to make me think it will.) I'm not getting my hopes up, but I thought I had read in posts that some had gotten better.

 I'll be 12 weeks post radiation and chemo this Thursday. 

 Bye the way, my ability to taste has beeen improving since my first post a few weeks ago. I'm thankful for the feedback from you all. Your words and experience have been a great help. Day to day I remember things you've shared as I am recovering.

:)

~Vicki

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Yes it does...

    but by degrees....it's slow to come back.  I'm going on 8 months out of rads and 6 months out of all treatment, and have gone from totally dry and carrying a bottle everywhere, to being able to lick my lips and not needing my bottle to be at my side night and day....(tho when I arrive somewhere, I do need a sip of water)....Some folks here have said it takes up to 2 years for most of it to come back....so I'm waiting it out.

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #3
    Everyone is different but.....

    I've yet to go through treatment but my doctors are saying I should get close to normal saliva production in 6 months to a year.

    "T"

     

  • catluver96
    catluver96 Member Posts: 73
    #4
    fishmanpa said:

    Everyone is different but.....

    I've yet to go through treatment but my doctors are saying I should get close to normal saliva production in 6 months to a year.

    "T"

     

    Thanks for the replies.

    Thanks for the replies.

    Maybe I'll get my hopes up just a little bit. I know nothing is for certain, but I can hope. Smile

     

    ~V

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    it does, I've heard

    Vicki,

     

    It gets better every time I take a drink of water, but then it goes away.  I use Xylimelts when I go to bed or when I don’t want to have to drink water as often (it helps).  Listening to the “wise ones” (veterans) improvement is in the cards you just don’t want to hold your breath.

     

    Today, at 10 months post, my dry mouth is better, if I get caught answering a phone without my water bottle I can fake it and have a conversation.  I still don’t dare start eating something with out some form of beverage ready (usually 2 to 3 glasses of water or equal every meal)

     

    Cheers,

     

    Matt

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    catluver96 said:

    Thanks for the replies.

    Thanks for the replies.

    Maybe I'll get my hopes up just a little bit. I know nothing is for certain, but I can hope. Smile

     

    ~V

    I was BOT, Stage 4, with lymph node involvement on both sides, so I got the maximum dosage, everywhere.  They couldn't protect or save anything.  I'm 2 1/2 years out, with scant improvement in saliva. You do learn to live with it; I have become so expert at compensating, that I really only still struggle with it at night.  I do carry a water bottle everywhere, try to avoid eating dry meats, ... floss and brush four times a day, because absent spit, you just can't clear the food particles out of your mouth. TMI, sorry.

    Deb

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Absolutely...

    Like others have mentioned, we are all different, but most on here eventually do have improvement...

    Myself, I went through sixtgeen weeks of chemo, seven of which were concurrent weekly with the 35 daily rads...

    My taste and saliva were totally shot for several months..., little by little, measured in weeks and months it returned.

    It took nearly two years to completely get all taste back and about 95% of the saliva..., juts a little dry at night.

     

    It didn't take that long to get quite a bit back, but a few things took the entire time.

     

    Hang in there and I'm pretty sure over time, you'll get a huge percentage back from what you are seeing now.

     

    Best ~ John

  • ditto1
    ditto1 Member Posts: 660
    #8
    Skiffin16 said:

    Absolutely...

    Like others have mentioned, we are all different, but most on here eventually do have improvement...

    Myself, I went through sixtgeen weeks of chemo, seven of which were concurrent weekly with the 35 daily rads...

    My taste and saliva were totally shot for several months..., little by little, measured in weeks and months it returned.

    It took nearly two years to completely get all taste back and about 95% of the saliva..., juts a little dry at night.

     

    It didn't take that long to get quite a bit back, but a few things took the entire time.

     

    Hang in there and I'm pretty sure over time, you'll get a huge percentage back from what you are seeing now.

     

    Best ~ John

    SLOWLY BUT IT DOES

    MY MOUTH IS STILL DRY OVERNITE ALMOST LIKE STICKY AS MY TONGUE AND SIDES OF MY MOUTH DO DRY OUT I USUALLY WAKE UP EVERY FEW HOURS AND SWISH AND SPIT OR TAKE A DRINK, HOWEVER DURING THE DAY I LIKE OTHERS NO LONGER NEED A DRINK OF WATER EVERY FEW MINUTES, I DO KEEP WATER WITH ME BUT SOMETIMES GO HOURS WITHOUT A DRINK.  NOW THAT DOES NOT APPLY TO EATING I STILL NEED A LOT OF FLUID TO GET THRU MY MEALS.  HOPE YOURS GETS BETTER SOON

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #9
    Echo

    Vicki,

    I will repeat what all the above stated, each of us is different in our recover. Much like D Lewis mentioned, it also depends on how hard you were hit with the Radiation.

    I am like some of the other members here that have zero saliva. Like you, I read where it came back for many and my hopes stayed with me after I read a post years ago by someone here that wrote their saliva returned around the 6 year mark, so I held hope until then. It was suggested by a friend to try accupuncture after it worked for them. I gave it a try, no go. Your results may be much better then mine.

    Like it was mentioned above, we adapt and overcome the situation. I use the Biotene products and before going to bed, I take a sip of water followed by two squirts of the Biotene mouth spray, I use it during the day also.

    My Best to You and Everyone Here

  • Laralyn
    Laralyn Member Posts: 532
    #10
    Eight months out...

    ...and a little saliva is back. Not much though. It changes so gradually that you don't notice it. Over Christmas at my parents' house, I didn't realize until afterward that I'd eaten an entire side salad without taking a drink of water. I still can't do that most of the time, but I did it once! 

    It will probably get better for you, but there's no way to know exactly what percentage will return. And, as folks here and my oncologist have said, it can take years. Here's hoping! :-)

  • s_moore
    s_moore Member Posts: 2
    #11
    saliva

    Hi Vickki, I have dry mouth too and have had it since 2003. It does get a little better but make sure you take your pilocarpine at least 3 times a day and I also keep biotene spray in my purse and take it every place I go. Of coarse I am sure the Dr. told you to drink lots of water also and use that saline solution of salt and soda to help with the phlem. Good luck...hope this helps a little.    Shirley

     

  • s_moore
    s_moore Member Posts: 2
    #12
    CivilMatt said:

    it does, I've heard

    Vicki,

     

    It gets better every time I take a drink of water, but then it goes away.  I use Xylimelts when I go to bed or when I don’t want to have to drink water as often (it helps).  Listening to the “wise ones” (veterans) improvement is in the cards you just don’t want to hold your breath.

     

    Today, at 10 months post, my dry mouth is better, if I get caught answering a phone without my water bottle I can fake it and have a conversation.  I still don’t dare start eating something with out some form of beverage ready (usually 2 to 3 glasses of water or equal every meal)

     

    Cheers,

     

    Matt

    saliva

    What is Xylimelts?

  • NJShore
    NJShore Member Posts: 429 Member
    #13
    s_moore said:

    saliva

    What is Xylimelts?

    Xylitol

    Hi,

    xylitol is a sugar alcohol sweetener, that has a tendency to encourage saliva glands into doing their thing!

    my husband has TheraMint (3M product) that our dentist ordered for him... Many gums, mints, etc can be found in your local drug store too. It is an artificial sweetener, so check that section too.

    Kari

  • ramcharger83
    ramcharger83 Member Posts: 3
    #14
    s_moore said:

    saliva

    Hi Vickki, I have dry mouth too and have had it since 2003. It does get a little better but make sure you take your pilocarpine at least 3 times a day and I also keep biotene spray in my purse and take it every place I go. Of coarse I am sure the Dr. told you to drink lots of water also and use that saline solution of salt and soda to help with the phlem. Good luck...hope this helps a little.    Shirley

     

    Dry Mouth

    The dry mouth will get better the more you learn to deal with it. I had Nasopharygeal Cancer in 1999 with 6 months of chemo and 35 treatments of radiation. I also take pilocarpine and use biotene twice a day.  I will tell you using fluoride trays to sleep at night will help you sleep longer without water and help with teeth issues.  

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