RAI and salivary glands

Hi everyone,
I didn't know if anyone has experienced issues with delayed salivary gland stuff post RAI, but I thought I'd post this for those of you who weren't aware... or experienced this, as I have and panicked before realizing the connection to the RAI. Below is an article on salivary gland swelling a bit after RAI. Just an FYI :) I wasn't quite prepared for it to show up 6 weeks post RAI!

Delayed Salivary Gland Pain and Swelling after RAI
By Douglas Van Nostrand, M.D. Reprinted, with permission, from page 184 of Chapter 18 of the book “Thyroid Cancer: A Guide for Patients”, (Keystone Press, 2004. Douglas Van Nostrand, M.D., Gary Bloom, and Leonard Wartofsky, M.D. See http://www.thyca.org/TCGuide.htm)

While pain and swelling of the salivary glands can occur within days of radioiodine treatment, some patients may not experience it until several months later.

The most likely cause for this appears to be a blockage of the flow of the saliva out of the glands caused by a narrowing of the ducts. This narrowing is the result of scarring due to inflammation caused by the radiation. Thus, as one begins to eat, the volume of saliva increases but cannot pass through the narrowed duct into the mouth. The gland then rapidly swells, which can be painful. In some people, discomfort can result simply by looking at appetizing food.

The pain and swelling usually are not permanent but may last for several weeks to a few months. Chronic pain and swelling also is possible.

The presence or absence of swelling and pain of your salivary gland within the first week after your treatment does not necessarily mean you will or will not experience this side effect months later.

Gently massaging your salivary glands may help reduce the swelling or pain.

Depending on the severity and persistence of the symptoms, your physician may refer you to an otolaryngologist, also called an ear, nose, and throat specialist. This physician can evaluate the swelling and pain to make sure they are not due to other causes. If the radiation turns out to be the likely cause, the physician may consider other diagnostic tests to see if any of the main ducts are narrowed and could be reopened.

If you have experienced problems with your salivary glands following a previous radioiodine treatment, notify your physician before undergoing any additional radioiodine treatment. This side effect should not necessarily prohibit you from having additional radioiodine treatments.

Comments

  • nasher
    nasher Member Posts: 505 Member
    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.
  • MarinMark
    MarinMark Member Posts: 148
    nasher said:

    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.

    Nasher, what dose of RAI did
    Nasher, what dose of RAI did you have ? Once ? Twice ?
  • teamwink
    teamwink Member Posts: 97
    nasher said:

    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.

    onset
    If you don't mind my asking, what was the progression of this? I think mine started swelling a few weeks after RAI, but I took it as reactinos from a cold and stress, rather than what it was. I am not sure what to do about it - wait and see? I welcome 'been there' info :)
  • teamwink
    teamwink Member Posts: 97
    nasher said:

    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.

    onset
    If you don't mind my asking, what was the progression of this? I think mine started swelling a few weeks after RAI, but I took it as reactinos from a cold and stress, rather than what it was. I am not sure what to do about it - wait and see? I welcome 'been there' info :)
  • teamwink
    teamwink Member Posts: 97
    nasher said:

    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.

    onset
    If you don't mind my asking, what was the progression of this? I think mine started swelling a few weeks after RAI, but I took it as reactinos from a cold and stress, rather than what it was. I am not sure what to do about it - wait and see? I welcome 'been there' info :)
  • nasher
    nasher Member Posts: 505 Member
    nasher said:

    thanks for the article
    yes i was told to massage the salivary glands.

    I also have reduced functionality of my salivary glands so i don't get the pain issues but i get constant dry mouth issues.

    yes i had pains and such in my salivary glands for about 3 months after RAI. and by then the functionality of them had been reduced.

    175mCi
    Ok the dose I had was 175mCi

    I only have had one treatment

    i noticed within a a day or 2 reduced salivary production and pain. I massaged my salivary glands as the doctor suggested and until i got a squirt of fluid and easing of pain.

    after 6 weeks when i next saw my endo he said it was not common but it "can happen" and he expected it would all go back to normal over a few months... It didn't. at my 1 year mark out from RAI he told me that the condition of my salivary glands as well as my taste buds was probably the new normal for me.

    ---
    I welcome 'been there' info :)
    ---
    honestly its hard for me to remember that time cause as soon as I was safe for surgery they send me in to get my hearing repaired (stapendectomy)... when they "fixed" my hearing another major condition developed "vertigo" I have been told by the doctors that it could not have been from the surgery on the ear or any of the thyroid issues or RAI or such... but anything that starts within a day or 2 from any surgery... its likely the surgery may have done something with it.. especially when your talking a few cm at most from the surgical site. at that time they had me on Valium and Vicodin at close to the max dosage so for some reason i didn't do much and i don't remember much of that time.

    wish i could tell you but i dont have much in my daily journal from those days to refer to
  • Suz3542
    Suz3542 Member Posts: 1
    salivary glands - many years later
    After high doses of RAI during the years of 2002-2004 I had occasional dry mouth and hearing loss on my rt. side. The salivary glands started to work again but rt. ear always had problems -
    It is now 2011 and have just lost all salivary gland function. I saw a specialist who confirmed this. I am told to stay away from sugar and high citrus due to teeth decay.
    If anyone knows of this happening years after I would like to know.
    Do any medications affect salivary gland loss? What are the alternatives?
  • Cat67
    Cat67 Member Posts: 2
    edited July 2016 #9
    Support group for dry mouth

    i just started an online support group for dry mouth suffers. Search Xerostomia support on facebook