Saliva

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Hi! I had neck and base of tongue cancer, and am 10 weeks removed from 38 radiation treatments + weekly Erbitux. I tolerated treatment well, but I'm afraid my salivary glands got completely fried in the process. I have almost no saliva, and talking and eating are very difficult. Is there any hope or am I going to be like this forever?

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  • sonyk728
    sonyk728 Member Posts: 124
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    Do you take Salagen?
    Pdog- were you prescribed salagen during or after your rads? I take a Salagen pill 3 times a day and I am just about a year out of radiation. They help a lot- I would say almost back to normal. My mouth gets very dry when I forget to take the pill, and when I do, it helps.
  • katenorwood
    katenorwood Member Posts: 1,912
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    One step at a time...
    Pdog61,
    Everyone is different with this issue. And of coarse everyone heals in their own time too. There are different options your oncs., and dentist can give you for this. I also carry water everywhere. I don't think in my lifetime I have drank as much water as I have in the last 7 months. Best of luck to you, warmest regards, Katie
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    spit limited
    Pdog61,

    17+ weeks post with similar treatments. Saliva is definite problem, but taste coming back a little at a time (had buttered toast today, first bread since January, not bad, I give it a 2).

    I use Xylimelts to help with dry mouth, they work a little and for sure they have been letting me sleep through the night.

    No taste buds and no saliva, no saliva and no taste buds the (extra) gift of radiation. Hopefully, the big gift is a NED in my future.

    Be patient.

    Best,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Hard 2Say...
    From most that I have seen on here over the last few years, ods are in your favor to regain a good percentage of your saliva back.

    Myself (35 daily rads, and four types of chemo), have regained nearly 95% of my saliva back, and more like 100% on the taste.

    I don't remember where I was exactly at 10 weeks..everyone is different anyways.

    It was a few months that I had no saliva, every bit of food required a sip of water. Every few words spoken, a sip of water...

    A bottle of water with me pretty much 24/7...

    Recovery is realized more in weeks and months more so than days and weeks....

    It took nearly two years to regain the 95% or so of saliva I have. Though I did slowly start getting it back a few months post treatment.

    I'm am at over three years post Tx.

    So for you, I would say more than likely you are to a point that you should start seeing a little improvement very soon.

    Best,
    John
  • patricke
    patricke Member Posts: 570
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    SALIVA
    Forever, now that's a good question Pdog61, I was saliva free, thanks to the RADS fry, for 10 years, and then last summer it spontaneously resumed flowing; go figure. During the intrim, I always carried a small bottle of Mouth Kote with me, which worked very well to keep my mouth moist. I took Salagen for a number of years, but d/c'ed it when it was obvious that it was not achieving the desired effect. Hopefully, you will have saliva flowing again, sooner than later, but in the meantime, keep sippin, and sprayin. Good luck.

    PATRICK
  • Greend
    Greend Member Posts: 678
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    Spit
    Haven't been able to spit on the sidewalk since 1996...this is my "new normal" now.
  • Crazymom
    Crazymom Member Posts: 339 Member
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    sonyk728 said:

    Do you take Salagen?
    Pdog- were you prescribed salagen during or after your rads? I take a Salagen pill 3 times a day and I am just about a year out of radiation. They help a lot- I would say almost back to normal. My mouth gets very dry when I forget to take the pill, and when I do, it helps.

    Salagen
    I have never heard of Salagen. I am 4 months post radiation and have a very dry mouth. Thanks for mentioning it. I will ask my doctor next visit!

    Ann
  • buzz99
    buzz99 Member Posts: 404
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    Saliva
    Buzz's saliva came back after treatment. He did use a mouth spray made by Biotene which really helped until it came back. Karen
  • blackswampboy
    blackswampboy Member Posts: 341
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    CivilMatt said:

    spit limited
    Pdog61,

    17+ weeks post with similar treatments. Saliva is definite problem, but taste coming back a little at a time (had buttered toast today, first bread since January, not bad, I give it a 2).

    I use Xylimelts to help with dry mouth, they work a little and for sure they have been letting me sleep through the night.

    No taste buds and no saliva, no saliva and no taste buds the (extra) gift of radiation. Hopefully, the big gift is a NED in my future.

    Be patient.

    Best,

    Matt

    xylimelts
    gracias for the tip. delivery arrived today, and they seem to work.
    the amazon affiliate charged me 7$ for 3-day shipping though, ouch. gouging the afflicted.
    off for more nap-time testing!
  • shoemandan1
    shoemandan1 Member Posts: 19
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    Saliva Progress
    After being a year out of treatment for the same thing I have 60 % of my saliva and 80% of my taste buds back. It has been a slow process. After treatment I had water every few minutes now its every 20 min to a half hr for a sip. I still have dry mouth at nite but do keep a bottle of water by my bed. I am at the point now where I am able to eat popcorn and chips again. for 3 months I was on a continual feeding tube and just got off it last september. I still have milk and water when I eat but it is getting better. So I guess what I am trying to say is that it is a slow process but everything does get better in time.


    Dan
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Saliva Progress
    After being a year out of treatment for the same thing I have 60 % of my saliva and 80% of my taste buds back. It has been a slow process. After treatment I had water every few minutes now its every 20 min to a half hr for a sip. I still have dry mouth at nite but do keep a bottle of water by my bed. I am at the point now where I am able to eat popcorn and chips again. for 3 months I was on a continual feeding tube and just got off it last september. I still have milk and water when I eat but it is getting better. So I guess what I am trying to say is that it is a slow process but everything does get better in time.


    Dan

    As you can see ...
    everybody is different. No matter when or if you saliva comes back the alternative is worse obviously :)

    As for eating again you will. As for pain, it will end. As for taste buds, same thing ...some, half or all will come back just no telling when.

    I had base of tongue stage III with one lymph node involved HPV+ I too had Erbitux and radiation only. No surgery or plantinum chemo.

    I am not 7 months out of treatment and I have to say I have 90% of my taste back, can eat popcorn, bread, chips (this is the hard stuff to eat after our type treatments they say) and last night I took my wife out to Steamers (nice place) and had Veal Marsala with Idaho Potatoes and steamed veggies ..it as sooooo good. Took me over an hour to eat the whole plat ..and of course the last 40 minutes of the food was pretty cold ...but I did not care :)

    Hang in there ....things do get better, lots of good suggestions above from folks who have had it the same or worse ...

    Best,

    Tim