CancerCompass message board discussion started by Cmms1950 on 9/22/2007 http://www.cancercompass.com/message-board/message/all,16402,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with papillary thyroid cancer in Feb. '07.  Had TT on Valentine's Day, RAI (used thyrogen injections - so easy), 178 mc.in May.  Had my first 3-month check-up last of August - every clean.  No traces of cancer anywhere. My problem is my salivary glands.  Within the last month, (since the check-up), my left salivary gland is very painful when I eat, especially breakfast and lunch - not so much dinner (makes no sense to me).  This past week, my right side now is painful.  Anyone else have this problem?  If so, what have you done about it?  How painful is the treatment?  I see my oncologist about this on Monday.Research I've done on this indicates it's due to scar tissue narrowing the ducts for the saliva trying to get through to the mouth when eating. Any info is really appreciated!Chris Cmms1950 Sat, 22 Sep 2007 00:00:00 GMT I posted on 8/30 about cheek swelling.  I had a 2nd massive RAI dose in April and in August my right salivary gland became very enlarged and painful before lunch. I was very alarmed and called my endo, but she said this is a normal side effect of the radioactive iodine expelling from the body.  It reoccured at meal times (salivating). But over time it gradually diminished. And then my left side started up, although not as painful.  It has mostly stopped now, although I have some episodes on both sides. Overall, it went from painful, to sore, to tender and now just aggravating. Alext Sat, 22 Sep 2007 00:00:00 GMT Thank you so much for replying.  You give me hope.  I'll see what my doc says on Monday - I'll let you know what he says.Chris  Cmms1950 Sat, 22 Sep 2007 00:00:00 GMT I also had my TT in 2/07 and had 173micu of RAI.  Just this past month I had pain and swelling in first the rt. and then the left glands.  I read that you should gently massage your parotid and submaxillary glands.  I did that everyday and felt the warm, salty saliva start flowing.  It went down and the pain was relieved.  Ask your Dr. when you go this coming week. Lois  Lois6 Sun, 23 Sep 2007 00:00:00 GMT Thanks, Lois, for your reply.  I do massage them, and it does help.  Have you consulted with your doc?  If so, what did he/she say?I forgot to mention in my original message that last week, I had cheek pain due to something swollen in there, it went away, and now this week I have the same thing on the other side!  At first, I thought it was a pimple forming, that's the kind of pain it is, but that's not what it is.  This all is driving me nuts!I'll let you know what my doc recommends.Chris Cmms1950 Sun, 23 Sep 2007 00:00:00 GMT I too have a salty fluid taste from these swollen salivary glands. My left side hardened up today at lunch, but now is fine. Alext Wed, 26 Sep 2007 00:00:00 GMT I had RAI 11/06, and around 4/07 i had terrible pain in my salivary glands (cheeks and behind/below the ears). i also had a salty dicharge that i could taste, especially when i massaged my cheeks. it lasted for several weeks but eventually went away. i still have a little bit of tenderness, but it is nothing like it first was. i did see an ENT who told me that it is a direct result of my RAI. unfortunately i have to have another treatment in the beginning of 08, so i am worried that it will get even worse. i hope yours is getting better. use warm compresses on your glands and massage them. also, the dr. recommended eating sour foods - anything that gets your glands going. i bought a huge bag of sour patch kids...it was painful to eat them but eventually it got better. mvs1976 Thu, 01 Nov 2007 00:00:00 GMT forgot to mention that it started on the right side, then a week later was on the left side, then both. eventually the pain subsided so don't give up hope. mvs1976 Thu, 08 Nov 2007 00:00:00 GMT hi there,i had rai back in september of 2007, and in february 2008 i began experiencing the salivary gland issues.  i did have an immediate reaction to the treatment, but it went away after a few days.  the symptoms began flaring up again... it began in my right gland, and a week later spread to my left.  it was painful at first, but now i just occasionally feel pressure and stiffness below my ears and around the jaw area.  does anyone know if this eventually goes away, or will this be a permanent condition that i will be forced to live with?  another question is why did it take FIVE MONTHS to occur?  the salty taste is horrible.thanks!     nboonsiak Fri, 14 Mar 2008 00:00:00 GMT Hi There!  I just found this website.  I too have undergone RAI after total thyroidectomy for papillary carcinoma.  I have had a couple of RAI treatments and have noticed that a few months after each treatment, my salivary glands get "stopped" up.  For me, it hits one side of my face and then the next making it's way through the different glands in my mouth. My last treatment was in February 2008 and my painful gland didn't start until yesterday....My endo tells me to massage it and eat sour candies.  It hurts to eat the candies but it gets your mouth producing saliva.  What my doc told me the reason it gets that way when you're eating or about to eat is that your mouth is getting ready for the digestive process and saliva is part of the process.  Apparentally something is stopping up the little tube that allows the saliva to be excreted so the saliva that you have produced to eat stays in the gland and isn't let free, so it get's really hard and painful.  It eventually does go away but just takes some time.  Good Luck!  brittmoo1971 Tue, 17 Jun 2008 00:00:00 GMT Wow.  My sister just found this website, and thank God she did.  I have had these terribly swollen salivary glands for a couple of months and was told that I may have a disease called Sjogrens disease.  It's not it at all.  This is exactly what it is.  I had RAI treatment in Oct. 07 and the swelling and pain in my salivary glands started in May.  I thought that I was starting another battle, after just having finished the thyroid ca one.  I am so thankful to my sister and to this website for taking a huge load off of my shoulders.  I will be having another surgery soon to remove a remaining piece of thyroid tissue that 'snuck up' on me, or was never removed.  I will then have another dose of RAI after that - at least I'll know to expect this again.  Thank you!!!! carriep Mon, 07 Jul 2008 00:00:00 GMT I can't believe it! I to have experienced swollen salivary glands!  I had RAI treatment in November 2007 and first experienced my right salivary gland swelling in April 2008. My right salivary gland swelled first and then my left salivary gland swelled about a week later. I also had a salty taste in both sides of my mouth at different times. I went to a specialist and he told me the swelling was due to scare tissue in the gland. He also told me there was nothing I can do about it! It is now July 2008 and I am still experience swelling in my salivary glands but it's not as frequent and they doesn't swell as big. I am noticing that the inside of my cheeks are swollen where my duct is and on the sides. I will keep everyone updated if it goes away. greengoddess11 Sun, 13 Jul 2008 00:00:00 GMT Man, it's just like clockwork.  You and I were only a month apart on the RAI treatment, and exactly a month apart with these symptoms.  I can't believe that I was never warned about this.  Thanks for responding greengoddess11.  It will be interesting to see how this continues.  My salivary glands are very sore but not as swollen as they used to be.  Hang in there! carriep Tue, 15 Jul 2008 00:00:00 GMT hi there...my salivary gland issue arose about FIVE MONTHS after having my rai treatment.  i thought i had salivary gland cancer or the mumps.  it started on the right side and about a week later affected the left.  i saw my endrocrinologist, and he "blew off" my sypmtoms as a bad tooth and told me to see my dentist.  how could a bad tooth be in my CHEEK?  so,  i saw my dentist, who referred me to an oral surgeon, who referred me to an ear-nose-throat.  the ent ran a scan with contrast dye, hoping to find stones... the scan was inconclusive.  however, the ent was convinced that my salivary gland problem was directly related to the i-131 treatment.  why it takes so many months to occur... nobody seems to know.  it is getting better with time.  it is now july and i have not had a large gland flare-up since march, but i still have some occasional tightness in front of and below my ears.  i have an appointment today for my one-year checkup and scan with thyrogen and was given another small dose of i-131, but this time there are no restrictions because the dose is so low.  i'm taking precautions with my 21 month old daughter anyway, because any way you slice it, i'm still radioactive.  i brought up the salivary gland issue with my oncologist, and he said that in 30 years of treating patients, he has NEVER had a patient complain of my symptoms.  go figure.  good luck to you! nboonsiak Fri, 18 Jul 2008 00:00:00 GMT