Dry Mouth

rcaulder
rcaulder Member Posts: 70
in Head and Neck Cancer #1

I feel like I'm going backwards in a sense. I completed radiation 7 weeks ago to the day. Seems my salivary function was better during treatment and up to a few weeks ago. It just seems like they shut down over the last few weeks. I thought after treatment I would only have one way to go, that was to only improve. Getting worse was not something I expected. My Dr wrote a script yesterday for Pilocarpine, doesn't seem to help. It's only been a day though. The cancer center offers acupuncture. I'm not sure about that. I know everyone is different. Has anyone else 7 weeks out gotten worse with salivary dysfuction? If so, when did you start to see any improvement. I'm reading some people never do.  I just can't imagine going the rest of my life like this.   

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    To this day....

    ...and I'm three years out, my spit comes and goes....some days I'm dry as a bone, and other days it's much better.  The same can be said for my taste buds.  I used to carry a bottle of water every where I went....today, I have one by my living room chair, one by my bed...and I carry water in my car.  I don't always need it, but I know it's there if I do.  Also, have you tried Xylimelts?  They work for me (and a few others on here)....tho I couldn't use them until I was three months out of treatment because they stung. 

    The first three months out of treatment are the baby steps....things come and go....but know....that the daily comings and goings are normal....you really ARE getting better.  It's just hard to see it at first.

    p 

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    You can still be "Cooking"

    rcaulder,

    My radiation Oncologist stated that we "Cook" from anywhere between 4-8 weeks after our final treatment, some a bit longer.  So, in reality, you could still be feeling the full effects of the radiation. Each person recovers at their own pace so your mileage may vary. Also, my RO stated that the radiation will play havoc on us the first year so we can expect ups and downs along the way. Meaning our energy levels will fluctuate during that time and also the levels of taste, saliva, etc.

    I did try the accupuncture, but several years after my treatments. It did not work for me, but another person I know, it worked after his 2nd visit, so once again, each of us reacts differently. We don't know the answer until we try.

    Measure your recovery by weeks not days as changes go slower now.

    My Best to You and Everyone Here

  • MrsBD
    MrsBD Member Posts: 617 Member
    #4
    Dry Mouth

    It does sometimes seem as if it's two steps forward and one back. Acupuncture helps by preserving the salivary gland function. I had it during the eight weeks of radiation and Erbitux therapy and for about eight more weeks. At the very first session, I felt the saliva flow. It wasn't quite as dramatic in later sessions, but I never lost my sense of taste and today, dry mouth is not much of an issue. My acupuncturist used a protocol developed by MD Anderson Cancer Center in Houston. Another bit of advice is to continue to stay well hydrated. We tend to slack off when we don't have nurses and techs reminding us every day. It was almost four months after treatment ended that I felt pretty good,  so be patient with yourself. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    dry for now

    rcaulder,

    As I prepare to put in my 2,555th & 2,556th Xylimelt tablets in and go to bed I have to say for me taste and saliva are still improving.  Just as P51 said, my water bottle or glass of water are never far away, but I don’t need them as often and I still drink around 10 glasses of water every day.

    Be happy and revisit your condition in 6 months or a year (the H&N clock can move very slowly).

    Matt

  • KB56
    KB56 Member Posts: 318 Member
    #6
    Dry mouth

    Rudy, I took Pilocarpine twice and didn't see much from it but my doctor said it helps ~80% of the people.  I just didn't think I was seeing the result so quit taking it.    You need to give it a few weeks to give it time to get into your system before declaring defeat on this one.  

    I used to be jealous when reading about folks who had finished treatment and said they had 80+% of salavia back.   My mouth was like a desert and it just didn't seem to be improving, like my taste buds and everything thing else was starting to show improvement.   But here I am two years out and I can definitely see a big improvment over where i was and I can't tell you exactly when it got better as it was like so much else in that it was a very gradual improvement and I couldn't notice the day to day improvement but much more noticeable over a longer period of time.    I don't know if I'm back at 60%, 80% or whatever as far as salavia recovery but I am so much better and it took probably a year before I had a noticeable difference.

    I know at 7 weeks out it seems like an eternity and you should be back to normal but the radiation and Erbitux beat the hell out of your system and it takes time, a long time, to get back to where you feel like you see a difference.   For me it was 5 months before I could eat a bite without intense pain every swallow but today, I can eat ANYTHING but spicy AND I don't need a gallon of water to wash it down with.   

    It's a long road back but you've completed the toughest part without a doubt.   The body will continue to improve, but not as fast as any of us want.

     

    All the best,

    Keith

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    rc, i'm praying it gets

    rc, i'm praying it gets better for you quickly but like all have said, it takes time so you will have to be patient.  i know that's hard, i am NOT a patient person..........lol.  unfortunately, your body has been through a lot and it will take some tlc and time to heal.

    God bless you,

    dj

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