Salivary gland pain...again

Seri
Seri Member Posts: 14
edited March 2014 in Thyroid Cancer #1
My salivary gland is swollen and extremely painful again on one side. My RAI was at the end of the August. Has anyone had side effects this long after, or do I need to be worried it's not related?

Comments

  • rzemach
    rzemach Member Posts: 33
    #2
    salivary gland pain
    HI
    This has also happened to me. I had RAI last February due to papilllary CA then the pain started in June. My endo says that my salivary glands were damaged by the RAI and that this is fairly common. I know from other posts that for some it gets better. In my case, I no longer have a lot of pain but the swelling has continued and I have very bad dry mouth. I simply no longer produce enough saliva.

    Things to do:
    - I have gone to my dentist who has shown me how to massage the area which helps a bit.
    - I am also going to a salivary gland specialist in mid December and I hope he will be able to do something.
    - I found that regular ibufen really helps with the pain and brought down some of the swelling as well.
    - Suckng on hard candies was suggested by my endo but for me is just frustrating because they get stuck to the roof of my mouth.

    I just try to keep in mind that this is still better than having thyroid cancer

    hope this helps and good luck!!
    robin
  • Seri
    Seri Member Posts: 14
    #3
    rzemach said:

    salivary gland pain
    HI
    This has also happened to me. I had RAI last February due to papilllary CA then the pain started in June. My endo says that my salivary glands were damaged by the RAI and that this is fairly common. I know from other posts that for some it gets better. In my case, I no longer have a lot of pain but the swelling has continued and I have very bad dry mouth. I simply no longer produce enough saliva.

    Things to do:
    - I have gone to my dentist who has shown me how to massage the area which helps a bit.
    - I am also going to a salivary gland specialist in mid December and I hope he will be able to do something.
    - I found that regular ibufen really helps with the pain and brought down some of the swelling as well.
    - Suckng on hard candies was suggested by my endo but for me is just frustrating because they get stuck to the roof of my mouth.

    I just try to keep in mind that this is still better than having thyroid cancer

    hope this helps and good luck!!
    robin

    Thank you!
    Hi! Thank you for sharing! I saw my primary dr and an ent. We all agree that it's damage and/or blockage by the RAI and the onco said that it should go away in the next 6 mo-1 yr. The ent has done a new scope procedure where they put a tiny scope up the salivary duct and can find the blockage and remove it. I am waiting it out for a year, and if it's still bad, I will consider the scope. I'm a pretty lucky girl, my husband is a dental student and knows where to massage and has even been willing to massage it for me when he has the time. Candy makes my pain A LOT worse (it did right after the RAI too), but a hot shower and/or hot compresses help tremendously. Now that I am getting this side effect back under control, I finally remembered to tell the dr about all the extreme aches and pains in my joints and muscles off and on. Of course, he wants to do more blood tests and thinks Hashimoto's might have something to do with it. It seems like such a never ending process, but like you said, it's better than cancer.

    Thanks again!
  • Boodee
    Boodee Member Posts: 1
    #4
    I asked previously about the
    I asked previously about the location of salivary glands-- I had my surgery in March last year. For the past 4 weeks, both my glands have hurt like I had mumps. I didn't know what was happening until I read your comments here. I too am dry mouthed, and tend to sleep with my mouth open. This could be adding to my problems
  • lglegl70
    lglegl70 Member Posts: 20
    #5
    Me too
    I had RAI at the end of September and recently have started having problems with my salivary glands. At first I was scared that it was cancer that was back, since I had residual cancer in my salivary gland on my FBS. My endo said that this salivary gland stuff is a complication of RAI. Especially since I got very sick (vomiting) and couldn't eat anything after - not even the sour candy. At this point we are not sure if it's just a blockage or damage or a salivary stone. I have to massage the areas, increase my fluid intake, and eat sour candy. The sour candy for me doesn't really hurt, but whenever I eat anything I swell up. Because of this blockage I guess the backup of saliva makes it swell. It slowly goes down over time. This is all just so weird to me-especially since it seems to start for everyone around the 4 month post RAI mark (from some of the posts I've read). I just wonder if it will be permanent. I hate that we are all going through this, but it's comforting, in a way, knowing that I'm not alone.

    Take care!
  • sunnyaz
    sunnyaz Member Posts: 582
    #6
    lglegl70 said:

    Me too
    I had RAI at the end of September and recently have started having problems with my salivary glands. At first I was scared that it was cancer that was back, since I had residual cancer in my salivary gland on my FBS. My endo said that this salivary gland stuff is a complication of RAI. Especially since I got very sick (vomiting) and couldn't eat anything after - not even the sour candy. At this point we are not sure if it's just a blockage or damage or a salivary stone. I have to massage the areas, increase my fluid intake, and eat sour candy. The sour candy for me doesn't really hurt, but whenever I eat anything I swell up. Because of this blockage I guess the backup of saliva makes it swell. It slowly goes down over time. This is all just so weird to me-especially since it seems to start for everyone around the 4 month post RAI mark (from some of the posts I've read). I just wonder if it will be permanent. I hate that we are all going through this, but it's comforting, in a way, knowing that I'm not alone.

    Take care!

    Oh Crap!
    Oh Crap! I am five months post my first RAI and 19 days post second RAI at 178 mCi's (more than double the first dose). I am having difficulty tasting food and I am really worried about my Salivary glands. I am not salivating as much and my scan two weeks ago showed uptake in the salivary glands. Is there anything I can do now to prevent? Should I start sucking on sour candies from the time I wake up until bedtime? Will this help?
    Julie-SunnyAZ
  • nasher
    nasher Member Posts: 505 Member
    #7
    sunnyaz said:

    Oh Crap!
    Oh Crap! I am five months post my first RAI and 19 days post second RAI at 178 mCi's (more than double the first dose). I am having difficulty tasting food and I am really worried about my Salivary glands. I am not salivating as much and my scan two weeks ago showed uptake in the salivary glands. Is there anything I can do now to prevent? Should I start sucking on sour candies from the time I wake up until bedtime? Will this help?
    Julie-SunnyAZ

    not sure if it helped or not
    I sucked on sour candies alot after my 175mCi dose (first and only so far) and yes i think my salivary glands got damaged and everything ended up with a metalic salty taste to it... 9 months later i still have salavary gland damage and my sense of taste still hasnt come back fully

    i am not sure if it helped or not but i know it didnt hurt any

    so I would say suck on them and hopefully it will help.

    Craig
  • lglegl70
    lglegl70 Member Posts: 20
    #8
    anyone?
    With this salivary gland issue, I have been having sporadic "gushes" of something that tastes very salty. Does anyone else experience this?
  • lglegl70
    lglegl70 Member Posts: 20
    #9
    anyone?
    With this salivary gland issue, I have been having sporadic "gushes" of something that tastes very salty. Does anyone else experience this?
  • lglegl70
    lglegl70 Member Posts: 20
    #10
    Oops - Sorry for the
    Oops - Sorry for the multiple posts.
  • sunnyaz
    sunnyaz Member Posts: 582
    #11
    nasher said:

    not sure if it helped or not
    I sucked on sour candies alot after my 175mCi dose (first and only so far) and yes i think my salivary glands got damaged and everything ended up with a metalic salty taste to it... 9 months later i still have salavary gland damage and my sense of taste still hasnt come back fully

    i am not sure if it helped or not but i know it didnt hurt any

    so I would say suck on them and hopefully it will help.

    Craig

    Not sure if it helped
    Thanks Craig, you are right, it can't hurt. I did try to suck on candies to keep my taste buds and salivary glands working all day today. I have noticed a weird feeling on the top of my tongue since my last dose. It feels sort of stiff and raw. I have been salting and peppering my food a lot more these days. I can't seem to taste as well as I used to. I guess it was bound to happen after that much RAI. Better than the alternative though.
    Julie-SunnyAZ
  • nasher
    nasher Member Posts: 505 Member
    #12
    lglegl70 said:

    anyone?
    With this salivary gland issue, I have been having sporadic "gushes" of something that tastes very salty. Does anyone else experience this?

    yes after massaging the
    yes after massaging the glands i used to get a gush of salt taste corse most things still taste salty/metalic taste to me
  • herselftheelf
    herselftheelf Member Posts: 1
    #13
    lglegl70 said:

    anyone?
    With this salivary gland issue, I have been having sporadic "gushes" of something that tastes very salty. Does anyone else experience this?

    salivary glands
    Yes, this happened after treatment for several months. Massaging the glands increases it. I spit it out and used gum to combat the taste at work.
  • petalaire
    petalaire Member Posts: 1
    #14
    pleomorphic adenoma surgery on march 3
    guys, could anyone provide feedback here, please.

    i had my benign tumor surgery (ent) done on mar 3 and have a scar that's still healing (stiff/swollen). Ever since the surgery, i feel the tingle/zing on a treated area (salivary gland that doctor removed along with a coin sized tumor). what i mean by tingle/zing, when you see sour fruit/candies, etc. your mouth waters, right? i have that constantly and especially when i eat food with sour taste. im wondering if this will go away. my ent surgeon brushed off my concern saying not all of the gland was cut off (?).

    im worried my eating habit will not be the same after this as i think my salivary gland (place that had tumor) is still trying to salivate but something is bothering... and im bothered by it
  • NomadTad
    NomadTad Member Posts: 1
    #15
    nasher said:

    yes after massaging the
    yes after massaging the glands i used to get a gush of salt taste corse most things still taste salty/metalic taste to me

    Massaging salivary gland to reduce pain/swelling
    Can you tell me how you massage the gland? Is it just applying some pressure and making a circular movement with your hand?

    I had my second RAI (150 mCi) in early November 2010 and, starting last week, the area in front of my right ear started to throb and become quite painful. Looking online, this is the exact location of he parotid salivary gland.

    The pain is bearable this week but my cheek has swelled somewhat and there is slight redness as well.

    Due to my papillary CA I had a total thyroidectomy and modified neck dissection to remove the adjacent lymph nodes in 2008. Then RAI, then another surgery to remove more lymph nods that showed 'hot.' This gland swelling is a piece of cake in comparison.

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