Just finished my radiation treatments ( neck )

penny2001
penny2001 Member Posts: 9
edited March 2014 in Head and Neck Cancer #1
I have just joined up. I have read some of the messages already about what happens to the saliva glands after radiation. I am not to happy with the outcome. It is very difficult for me to accept at this time. My spit is really thick and I seem to gag on it all of the time. Does it get better.

Comments

  • lyolan1
    lyolan1 Member Posts: 95
    #2
    Post Radiation drymouth
    Hi Penny.
    I'm glad to hear that you are done with the radiation. Like they say, It is worse after the treatments are over. that was the case with me. However, After 10 days I was really doing exponentially better. I finished my rads 11/1/09, my pet scan is next Friday. Like you, the drymouth scenario made me very angry. I made a good case for myself to limit my right side rads. I probably have 50% saliva. I drink a lot of water to compensate. I guess that I am lucky because I can sleep through the night without having to drink. If you read the posts, the common theme is that everyone goes through the treatments in their own way, everyone is different. The other theme is "consider the alternative", unfortuneately, we have to deal with this issue if we want to live. I have a wife and (2) great kids to live for. So the drymouth is a small consolation to give up in exchange for life. Eventually, you will accept and live with it, like everyone else. Kick butt, be happy, and fight on. Peace. Alex.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Penny
    Welcome to CSN this is the place where you will find a lot of help and answers to your question from people who have been through treatment. Don’t get too disappointed about the saliva glands they do get a little better after treatment and your body will adjust to the new normal.

    Take care and remember this is home, talk to us about your concerns and fears, there is always someone here that can help you.

    God bless and keep you.
  • GRAVEY
    GRAVEY Member Posts: 83
    #4
    I finished my last of 35
    I finished my last of 35 Radiation treatments on Dec 17th, Base of Tongue cancer. I have no saliva really to speak of and It's Jan 15th. I take Salagen, it helps sometimes, but the true healer will be time. I cant say how much you will get it back. We all are different, just take solace in knowing that you arent alone. And by coming on this board you have helped your self tremendously. There are a lot of people and info on here that you can use to help you. My problem is my hearing, 2nd day after my first chemo treatment, I woke up and had the muffled sound, high pitched ringing in my ears, that is here to this day, that none of my docs had mentioned as a possible side affect. And unfortunately does not appear from what I have read on here and other sites to get any better.
    At least with the saliva issue, their are things you can do, like get yourself a water container that you can carry with you and drink it religiously, and look into meds that your doc can prescribe to possibly help like the Salagen.
    Good luck and Godspeed.

    GRAVEY
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Dry Mouth
    Welcome Penny....

    I finsihed my 35 around the middle of June 2009, so I'm out a little further than the others, other than my friend Hondo.

    I had Amofostine Injections in my abdomin everyday just before each of my daily radiations treatments. It was supposed to help with salivary function, primarily helping with the thick phleghm. I guess that must have worked, I've never eally had that, but do have problems with normal saliva production. It seems to be much better than when I forst finished, but not where it used to be.

    The heat in the house from this cold weather has made it worse, especially sleeping at night.

    Overall it is much better, and I expect it to continue hopefully. Sometimes and much more frequent than initially, I can actually produce some spit in my mouth, LOL...

    I usually always carry a small bottle of water with me, or close to the bedside at night. I am sleeping a little better, for months I only got about two hours at a time because of drinking so much water I have to go a lot. Wake up, bone dry mouth, drink a few swigs of water, go to the head, back to sleep....it's a cycle. I don't do that nearly as much any longer.

    Just stay positive, and stick it out...you've gone this far, you can deal.

    It improves, just very slowly, more like months or longer. I've spoken to people that have shown noticeable improvement over a year or so out from finsihing treatment....

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Stay Positive
    God Bless & Stay Strong....
  • fishingirl
    fishingirl Member Posts: 188
    #7
    It WILL get better:) I
    It WILL get better:) I finished my radiation Oct. 28 of this year, and I too wake up during the night to take a sip of water, and cough a bit. then the trip to the bathroom:) But, it is getting less often. You just have to go through it, and in time...much better.

    Cindy
  • rchunter
    rchunter Member Posts: 3
    #8
    Skiffin16 said:

    Dry Mouth
    Welcome Penny....

    I finsihed my 35 around the middle of June 2009, so I'm out a little further than the others, other than my friend Hondo.

    I had Amofostine Injections in my abdomin everyday just before each of my daily radiations treatments. It was supposed to help with salivary function, primarily helping with the thick phleghm. I guess that must have worked, I've never eally had that, but do have problems with normal saliva production. It seems to be much better than when I forst finished, but not where it used to be.

    The heat in the house from this cold weather has made it worse, especially sleeping at night.

    Overall it is much better, and I expect it to continue hopefully. Sometimes and much more frequent than initially, I can actually produce some spit in my mouth, LOL...

    I usually always carry a small bottle of water with me, or close to the bedside at night. I am sleeping a little better, for months I only got about two hours at a time because of drinking so much water I have to go a lot. Wake up, bone dry mouth, drink a few swigs of water, go to the head, back to sleep....it's a cycle. I don't do that nearly as much any longer.

    Just stay positive, and stick it out...you've gone this far, you can deal.

    It improves, just very slowly, more like months or longer. I've spoken to people that have shown noticeable improvement over a year or so out from finsihing treatment....

    JG

    Dry Mouth
    JG,

    I was wondering if you were also on a chemo drug during radiation.

    Thanks, Rick
  • ratface
    ratface Member Posts: 1,337 Member
    #9
    fishingirl said:

    It WILL get better:) I
    It WILL get better:) I finished my radiation Oct. 28 of this year, and I too wake up during the night to take a sip of water, and cough a bit. then the trip to the bathroom:) But, it is getting less often. You just have to go through it, and in time...much better.

    Cindy

    I'll second that
    It gets better but you have to pay your dues like Cindy said, drinking water, getting up in the middle of the night to pee, and losing sleep. For comparison I had 39 radiation treatments in July-August 2009, chemo/cisplatin, and a neck disection. Since this is almost memorial day lets call it two years post for comparison and I'm at a point where I can walk 2 miles without carrying a water bottle. I still always carry one into resturants and have one in the car. Eating certain things still requires drinking lots of water but my saliva is probably back to 80-90 percent of pre-diagnosis. Welcone aboard.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    rchunter said:

    Dry Mouth
    JG,

    I was wondering if you were also on a chemo drug during radiation.

    Thanks, Rick

    YUP...
    Before was Cisplatin, Taxotere and 5FU in three week cycles.

    During the 35 daily rads I had Amifostine (for mucous reduction and saliva preservation) and Carboplatin each week....

    John
  • stevenl
    stevenl Member Posts: 587
    #11
    ratface said:

    I'll second that
    It gets better but you have to pay your dues like Cindy said, drinking water, getting up in the middle of the night to pee, and losing sleep. For comparison I had 39 radiation treatments in July-August 2009, chemo/cisplatin, and a neck disection. Since this is almost memorial day lets call it two years post for comparison and I'm at a point where I can walk 2 miles without carrying a water bottle. I still always carry one into resturants and have one in the car. Eating certain things still requires drinking lots of water but my saliva is probably back to 80-90 percent of pre-diagnosis. Welcone aboard.

    Normally yes
    I am 13 1/2 months since my last rad. It does get better for a lot of us. Mine is about 45%, where as 3 months ago it was much worse. I too am getting stronger every week and am enjoying life now. Remember to measure your progress in weeks not days.

    All the Best,
    Steve
  • daveinwoodland
    daveinwoodland Member Posts: 16
    #12
    My experience was not the
    My experience was not the best and I am very disappointed that my whole life has been altered by my dry mouth that appears to be permanent at this point.

    I still am livid with radiologist not telling me beforehand that this may have occurred. They never did mention this other then, "you may experience some dry mouth". Yeah right, thank you for taking away any and all enjoyment I used to experience from eating. I am very depressed and upset at my outcome and hopefully your will be better.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    daveinwoodland said:

    My experience was not the
    My experience was not the best and I am very disappointed that my whole life has been altered by my dry mouth that appears to be permanent at this point.

    I still am livid with radiologist not telling me beforehand that this may have occurred. They never did mention this other then, "you may experience some dry mouth". Yeah right, thank you for taking away any and all enjoyment I used to experience from eating. I am very depressed and upset at my outcome and hopefully your will be better.

    Posted
    I posted my experience to your post on the same subject.

    Best,
    John
  • mxmom293
    mxmom293 Member Posts: 5
    #14
    Skiffin16 said:

    Posted
    I posted my experience to your post on the same subject.

    Best,
    John

    this is all scaring me!!! I
    this is all scaring me!!! I just finished my last rad of 35 just last thursday...the drs say that it peaks at the 10th day but should be feeling better after that...i have read nothing yet like this in anybody's post...is he lying to me? my mucous is soooo thick and i cant figure how to make it thinner...it leterally makes me believe i have no room to breathe!!!
  • TMollie
    TMollie Member Posts: 3
    #15
    mxmom293 said:

    this is all scaring me!!! I
    this is all scaring me!!! I just finished my last rad of 35 just last thursday...the drs say that it peaks at the 10th day but should be feeling better after that...i have read nothing yet like this in anybody's post...is he lying to me? my mucous is soooo thick and i cant figure how to make it thinner...it leterally makes me believe i have no room to breathe!!!

    this is all scaring me!!! I
    Hi, I have never posted on here before, but have lurked for months. I was searching for advice and experiences for my husband.
    He finished treatment for early stage 4 BOT and mets to one lymph node day after thanksgiving 2010.
    So as a caregiver I can only tell you what I saw and what he has told me. He has dry mouth still but he eats pretty good, can't eat like he used to but it is getting slowly better.
    As for starting to feel better after a couple of weeks yes you will. The changes will continue for a year or more but every day you will feel better. The mucous will get better over a short time.

    I want to use this time to say thank you to the wonderful folks on here. I have prayed for you, cried with you, rejoiced with you. You are true inspirations to all.

    Daveinwoodland instead of moaning about what you don't have try rejoicing for what you do have and you are alive. I understand your frustration as much as it is possible for me to understand but you are alive and I am sure someone out there is grateful to have you around.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    mxmom293 said:

    this is all scaring me!!! I
    this is all scaring me!!! I just finished my last rad of 35 just last thursday...the drs say that it peaks at the 10th day but should be feeling better after that...i have read nothing yet like this in anybody's post...is he lying to me? my mucous is soooo thick and i cant figure how to make it thinner...it leterally makes me believe i have no room to breathe!!!

    Perspective
    It's all a matter of perspective....in your MD's case, I'm presuming he can only speak either through patients experiences or studies....

    In my case (and others here), we speak from experience and actually going through it...been there done that.

    The peak of our experinces with radiation tend to start around the 3 - 4th week and continue through 3 - 4 weeks post rads....

    I had received Amifostine injections each day just prior to rads. Main purpose was to help relieve that thick mucous and also saliva reproduction eventually.

    Amifostine tends to be a little rough on most. I would dry out at each injection spot which was all around my naval. They would get red, itch, dry, and flake. Eventually around day 30, I started getting very high fevers 102.7 each day or chills fever down to 96.7 then back to 102+. I had to stop the injections those last few days so I could finish up with the rads.

    I can only say for myself, I feel they helped. I never had the thick mucous like some, and both my saliva and taste have returned pretty much 90+%... Some on here also had Amifostine, most did not...not even sure they still use it. I believe someone posted that they didn't, not sure. But anyways it's something you have each day about 15 minutes before rads to be effective.

    Also, it was recommended by my chemo MD, not my rads MD. The rads MD didn't think it was worth the price of side effects. My chem MD did it primarily for the reduction of the thick mucous....

    Now I did have the dry mouth for several months. My spit was more like sticky white foam...not it's all clear and I can form it at will...LOL.

    Anyways, you'll start feeling better, it's just a very long process measured more by weeks and months versus days....

    Best,
    John
  • Greend
    Greend Member Posts: 678
    #17
    mxmom293 said:

    this is all scaring me!!! I
    this is all scaring me!!! I just finished my last rad of 35 just last thursday...the drs say that it peaks at the 10th day but should be feeling better after that...i have read nothing yet like this in anybody's post...is he lying to me? my mucous is soooo thick and i cant figure how to make it thinner...it leterally makes me believe i have no room to breathe!!!

    MXMOM
    I was treated 15 years ago. I remember going to my ENT and telling him that I was plugged up and couldn't breath. He give ne a nasal irrigator that connected to a water-pic. The first time I used it, it scared the crap out of me because I had tubes in my ears (to relieve pressure when flying) and it hurt when I used it HOWEVER when that first big plug came out it was almost as good as sex. After that I used saline nasal spray (still do) and now take a generic brand of Mucinex to loosen the mucus.

    Hang in there!
  • Greend
    Greend Member Posts: 678
    #18
    mxmom293 said:

    this is all scaring me!!! I
    this is all scaring me!!! I just finished my last rad of 35 just last thursday...the drs say that it peaks at the 10th day but should be feeling better after that...i have read nothing yet like this in anybody's post...is he lying to me? my mucous is soooo thick and i cant figure how to make it thinner...it leterally makes me believe i have no room to breathe!!!

    MXMOM
    I was treated 15 years ago. I remember going to my ENT and telling him that I was plugged up and couldn't breath. He give ne a nasal irrigator that connected to a water-pic. The first time I used it, it scared the crap out of me because I had tubes in my ears (to relieve pressure from whenever I was riding in an airplane) and it hurt when I used it HOWEVER when that first big plug came out it was almost as good as sex. After that I used saline nasal spray (still do) and now take a generic brand of Mucinex to loosen the mucus.

    Hang in there!

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