The Return of Dry Mouth!

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Nonni1947
Nonni1947 Member Posts: 8 Member

Hi All, I am 2 1/2 months post- treatment for surgical removal of sc tumor  near the parotid duct followed by 6 weeks of cetuxima and 30 days of radiation.   After three weeks, I had some taste, and my mouth was slowly recovering.  i have one parotid gland, salivaary glands., and I had adequate moisture in my mouth Things seemed progressing towards the new "normal".   However, the last three days, dry mouth has returned  with a vengeance.  Has anyone experienced this?  i drink water constantly, and use Thera-breath mouth rinse.  Thanks.

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited July 2016 #2
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    it is a bummer

    Nonni1947,

    I have consistently had dry mouth for over 4 years.  It continually improves, but is still there.  There have been no “overnight” changes.  For my dry mouth I take Xylimets at bedtime or when I don’t want to be bothered by dry mouth.  I spray stoppers 4 whenever I feel the need.  I rinse and spit with Biotene throughout the day.  I always have a water bottle at the ready.

    Once in a while I try going to bed without Xylimelts, but wake up with my mouth dry and stuck shut and tongue in need of moisture.

    I can go for hours without a drink, but I am aware that a drink requirement may pop up without any warning.

    You just learn to live with it and do the best you can and always be prepared.

    Matt

  • Nonni1947
    Nonni1947 Member Posts: 8 Member
    edited July 2016 #3
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    CivilMatt said:

    it is a bummer

    Nonni1947,

    I have consistently had dry mouth for over 4 years.  It continually improves, but is still there.  There have been no “overnight” changes.  For my dry mouth I take Xylimets at bedtime or when I don’t want to be bothered by dry mouth.  I spray stoppers 4 whenever I feel the need.  I rinse and spit with Biotene throughout the day.  I always have a water bottle at the ready.

    Once in a while I try going to bed without Xylimelts, but wake up with my mouth dry and stuck shut and tongue in need of moisture.

    I can go for hours without a drink, but I am aware that a drink requirement may pop up without any warning.

    You just learn to live with it and do the best you can and always be prepared.

    Matt

    Dry Mouth

    Thanks, Matt. Every bit of information helps.

  • TracyLynn72
    TracyLynn72 Member Posts: 839
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    Similar issue here

    After my surgery and rads, I had too much saliva for a while.  I actually drooled quite a bit!  About a year after finishing rads, the dry mouth hit, and it hit hard!  I do the Xylimelts at bedtime, drink water all day long and try to keep as much moisture in there as I can.  I hope you find what works to help you.  I know the dry mouth has caused all sorts of dental issues for me. :(

  • MJG1
    MJG1 Member Posts: 137 Member
    edited October 2016 #5
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    Similar issue here

    After my surgery and rads, I had too much saliva for a while.  I actually drooled quite a bit!  About a year after finishing rads, the dry mouth hit, and it hit hard!  I do the Xylimelts at bedtime, drink water all day long and try to keep as much moisture in there as I can.  I hope you find what works to help you.  I know the dry mouth has caused all sorts of dental issues for me. :(

    Dry mouth

    I would not have expected dry mouth to hit way past treatment time.  My husband is nearing the end of the first phase of his treatment which was cisplatin and abraxane for 9 weeks.  He starts chemo/radiation on the 17th.  His radiation oncologist said he will lose his salavary glands.  He was very positive about that, but i wonder if he was just preparing him for the worst just in case.  I hear some people have some ability to produce salava, but I don't know any statistics.  I just dread this next phase.  Any insight or experiences.  Sure would like to be past all that part...We did get great news that the tumor shows no disease at this time after his surgical biopsy!  That's a win!!

  • MemphisTn
    MemphisTn Member Posts: 41
    edited October 2016 #6
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    Weeks After Rads

    Thick saliva, constant spitting, for a couple weeks post rad. 3rd week post, saliva was actually pretty good. However, this last week, I have to have water with me 24x7. Wake up with completely dry mouth at night and while I can manage far longer now during the day, I must eat with water to moisten food when I eat, and carry sugar free Halls with me everywhere. I wish there was an identifiable pattern but the Oncs are right, it really seems to hit people at different times, different levels, etc. From my own reading, even years out I read some people get better and some still struggle with side affects. God bless.

    Much love,

    -PC