Xylimelts - when they work, what do they do?

AnotherSurvivor
AnotherSurvivor Member Posts: 383 Member
in Head and Neck Cancer #1

I'm experimenting with ways to deal with dry mouth.  My rad oncol is very stuck on xylimelts, but when I try them they seem to not do much.  If they work for you, what do they do?  

Comments

  • Kapital
    Kapital Member Posts: 52 Member
    #2
    Xylimelts

    Hello. My husband had stage IV tonsil cancer 2 years ago, HPV and P16 +, with Carboplatin X 3 + radiation. He does like Xylimelts at night when he sleeps. One side of the xylimelt is "sticky" when you get it wet. He sticks one on his back, gum line, on each side of his mouth, before bed and is then able to sleep through the night without getting up for a drink of water. He feels it keeps the back of his mouth and throat moist during the night. He does not use them during the day. During the day, chewing on sugarless gum, as well as the ever present water glass, are helpfull. He orders xylimelts online at a reduced price, as he uses 2 each night. I hope this helps with your question. good luck.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited April 2017 #3
    life changes

    AS,

    Me too, 2 every night before bed time.  They keep my mouth from drying up and being stuck closed.

    I also use an assortment of xylitol products like gum, biotene rinse, biotene spray, stoppers4, oasis and spry tablets.  Everything helps a tiny bit.  AND water, plenty of water.

    At 5 years post, dry mouth is much better.  I still carry a water bottle (always), but don’t (always) use it.

    Same with eating, plenty to drink.

    Matt

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited April 2017 #4
    I can get them to stick to my

    I can get them to stick to my gum, but then they don't seem to do anything.  Over the course of hours they don't dissolve.  Do I need to irrigate them periodically?   Water bottles and gum are now common, and the effects of dry mouth are managed well enough that I sometimes think it's natural (which it also might be).   Really hard to tell what my status is now, especially hard to figure out what my outcome will be in six months, not sure I can see a direction things are headed.  The medical types are in 'it depends' mode.  Managed to fix some things, don't wake up with superdry any more.   Still have some radiation swelling, so my throat is maybe two weeks out from final recovery.  Still get very minor amounts of mucus, which are now welcome.

     I gave up on nystatin and just started doing a tongue rinse with an alcohol based mouthwash.  Thrush doesn't like that at all, and that eliminated more in a day than nystatin in a week.  It did turn my tongue blue for a couple of days.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited April 2017 #5
    AnotherSurvivor said:

    I can get them to stick to my

    I can get them to stick to my gum, but then they don't seem to do anything.  Over the course of hours they don't dissolve.  Do I need to irrigate them periodically?   Water bottles and gum are now common, and the effects of dry mouth are managed well enough that I sometimes think it's natural (which it also might be).   Really hard to tell what my status is now, especially hard to figure out what my outcome will be in six months, not sure I can see a direction things are headed.  The medical types are in 'it depends' mode.  Managed to fix some things, don't wake up with superdry any more.   Still have some radiation swelling, so my throat is maybe two weeks out from final recovery.  Still get very minor amounts of mucus, which are now welcome.

     I gave up on nystatin and just started doing a tongue rinse with an alcohol based mouthwash.  Thrush doesn't like that at all, and that eliminated more in a day than nystatin in a week.  It did turn my tongue blue for a couple of days.

    they stick for me

    AS,

    I have thought about your condition and mine and I think I make enough saliva to slowly dissolve the xylimelts and it leaves a film of sticky saliva covering my entire mouth.  If I don’t use them, my mouth is like it is glued shut and extremely dry.

    I don’t know if it is the small amount of saliva that makes them work for me and the no saliva you have that won’t let them work for you?

    There is no trick, they either help or they don’t.  I have become a regular user and with good luck.

    Matt

  • Robyn64
    Robyn64 Member Posts: 124
    #6
    I have tried xylimelts. They

    I have tried xylimelts. They did not work for me, fell out during the night. My mouth would get so dry that there was nothing for these tablets to adhere to.

    I was waking up with really bad dehydration headaches and my mouth bone dry throughout the night.

    Cut a long story short and through a bit of research have only in the last few days discovered Coconut Oil. Started to read the benefits of it.  Google " can I eat coconut oil". There is a site showing 23 reasons why coconut oil is good for you.... some being helps a dry mouth, dry itchy thot.  Says 2 - 4 spoons a day straight from the jar.

    Started taking it the last day and 1/2 . It has made my dry throat disappear for a very long period. Last night took it before bed, woke this morning with no dehydration  headache and not as dry as I have been. So far I'm very pleased !!!

    The only thing you might have to overcome is its texture. Because you are basically putting a semi solid oil in your mouth that melts on contact, to me it tastes slightly nutty.

    I believe this is an absolute miracle. I wish I had researched this sooner. It's worth a try.

    If you do try it, let me know how you went :-)

    Robyn 

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #7
    Okay, also add Okra water

    Okay, also add Okra water (there are threads here detailing the prodution of same).  I am discovering a fair bit of my dry mouth was related to a low level case of Thrush, the mouth fungus Candida.  As I have attacked it, my mouth has become significantly less dry.  Bad news is I am in week two of The Great Thrush Siege, and it is not going down easy.  When you hit it, hit it hard, and keep hitting it.  Liquid Nystatin will kill it, but it takes lots of it, applied 4 - 5 times a day for +30 minutes an application.  You walk a round with goop covering your tongue for 2 hours a day.

  • Robyn64
    Robyn64 Member Posts: 124
    #8
    So far very happy with 1

    So far very happy with 1 teaspoon of coconut oil in morning when I get up and another at night as I get into bed. Think I might stick to that right now. Not keen on sticky goo in my mouth. I am in Sydney Australia never heard of Okra water here. I feed okra to my parrots and I know its a sticky substance inside them.

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