HOW LONG DOES IT TAKE ???

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robert77dr
robert77dr Member Posts: 54
in Head and Neck Cancer #1
On a average how long does it take to get your saliva, taste, trouble swallowing back? I am 11 mouths past treatment and have tried all the Med’s I have read in everyone’s post’s My Doctor said I may have to live with it if I could get 75% I would be happy I know everyone is different. Also is there anything someone has found better than water to try to swallow there food with? The water seems to thin!! I have found more help reading your post than any of my Doctors.
Just looking for some encouragement.
Good luck to all
Robert

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    Hi Robert
    We are all very different in this regard. In my case i didn't need a tube, lost a lot of weight and my saliva and taste were completely gone for a while. My taste came back very slowly, not coming back completely for maybe 4-5 years after radiation.

    My mouth was very dry for quite awhile, especially in low humidity weather I had long dry nights and had to carry water everywhere. I finally got that back too, but it took probably the same 4-5 years to recover.

    Reading your blog post and todays post makes me think you have recoverd some in the last 7 months (your blog post was written at 2 1/2 months post radiation. I would hope you will continue that slow recovery for a long time to come. I know there is no guarantee of this, but the way it was explained to me, the body recovers forever after radiation insult, and I'll bet your distant future is better than today.

    When we look back, it is hard to grasp just how far we've come, one day at a time.

    Best.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    Robert, have you tried a
    Robert, have you tried a humidifier yet? I know I have mentioned it to you before. Did you try the full persciption of the salagen or evoxac or however you spell it. Have you tried the stoppers 4? How about the biotène oral balance dry mouth moisturizing gel?

    Are you brushing your teeth and rinsing through out the day? (I do my teeth 6 times a day, it helps feel a little better. If I'm out and about all day on the run and can't brush, my mouth feels even more disgusting. I carry a toothbrush and paste with me everywhere, and when I can I do brush, even out.)

    Milk, shakes, almond milk, smoothies, and coconut milk are all thicker than water. Water does not help me when eating. I must have milk. I only take very small sips of water throughout the day. If I take big sips of water, it doesn't go down well, I found thicker things are easier to swallow.
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #4
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    Robert77dr
    Hi Robert,

    I am 10 months past chemo and radiation. I, too, have trouble swallowing and very little saliva. Some foods tgaste okay while others taste terrible. I have to force myself to eat pureed food as I have no appetite. It's much easier to use my food tube but I know it's better to keep swallowing. I put a Tic Tac in my mouth for the dryness - try it! This really works for me and freshens your breath too. What kind of surgery did you have?
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    Hi Robert

    Wish I could tell you it will all be OK but can’t do that. As with me the first time I did treatment my eating and swallowing was back with in 3 to 4 months. Then with the second treatment everything went to hell in a hand basket and took well over a year or so to get back to just 60% or so of my saliva. Still have to drink water with every meal no matter what I eat. Swallowing is still a pain in the butt and it is all too just one side of my throat. All in all I am still here and being only 57 I am looking to be at lease 99 before I go.

    Wishing you well
    ╠╣ONDO
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
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    Mine
    Robert, my experience is similar to LTS above....

    At over 2 1/2 years post treatment,I have regained nearly 90 - 95% of both taste and saliva. But it took every bid of that to reach the point I am... I am still ntoicing improvement this far out.

    Not everyone will get back to the point that I am, but you never know...

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Skiffin16 said:

    Mine
    Robert, my experience is similar to LTS above....

    At over 2 1/2 years post treatment,I have regained nearly 90 - 95% of both taste and saliva. But it took every bid of that to reach the point I am... I am still ntoicing improvement this far out.

    Not everyone will get back to the point that I am, but you never know...

    Best,
    John

    Lucky John

    That is amazing that you are doing so well after treatment. I did good after my first treatment as everything was coming back but then when the second C hit after that things were very slow coming back to only about 60% of what it once was.

    Robert: just give it a little more time my friend as it takes a long time for some people but I am sure you will get most of it back

    Wishing you the very best
    ╠╣ONDO
  • robert77dr
    robert77dr Member Posts: 54
    #8
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    sweetblood22 said:

    Robert, have you tried a
    Robert, have you tried a humidifier yet? I know I have mentioned it to you before. Did you try the full persciption of the salagen or evoxac or however you spell it. Have you tried the stoppers 4? How about the biotène oral balance dry mouth moisturizing gel?

    Are you brushing your teeth and rinsing through out the day? (I do my teeth 6 times a day, it helps feel a little better. If I'm out and about all day on the run and can't brush, my mouth feels even more disgusting. I carry a toothbrush and paste with me everywhere, and when I can I do brush, even out.)

    Milk, shakes, almond milk, smoothies, and coconut milk are all thicker than water. Water does not help me when eating. I must have milk. I only take very small sips of water throughout the day. If I take big sips of water, it doesn't go down well, I found thicker things are easier to swallow.

    Tryed it all
    I have tryed it all. I sleep with a humidifier I took salagen for two months now taking evoxac have been for over two months I tryed stoppers 4 but it is hard to get so it's biotine spray I will go through a bottle in two days I keep it in my pocket along with water. My ENT Doctor told me last week that none of the Med's I am taking will work for Rad damage.It' not so bad at night but I wake up every morning about 5am trying to get the mucus up it takes a hour to get it up then it's all day long. I can taste a few things and some I cain't taste at all. I am having a problun trying to swallow food with just water it seen to thin??
    Robert

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