" how does it feel? how does it feel? to be on your own, with no direction home, like a complete unknown, like a rolling stone. " like a rolling stone, by bob dylan

oddly, or not so oddly, enough this blog is going to discuss salivary gland dysfunction- including salivary stones that can occur after treatment with radioactive iodine in patients who have had thyroid cancer. i am afraid that i know quite a bit about this subject from first hand experience. i had my I-131 ( radioactive iodine) in 2010. it was a large dose- 155 milicuries. in about a year after my I-131 dose, despite faithfully  following instructions that i was given ( drink lots of water, suck on sour candy, drink sour lemonade, to name a few) i developed salivary stones. how does it feel? well, bob, not very good. my first time experiencing salivary stones was when i was at work ( of course). my technicians and cashiers noticed that my jaw was swelling, looked  red and was  hot to the touch. they asked me what was wrong. i had no idea. i was praying that it was a dental issue ( also a side effect of the I-131) so i made an appointment with my dentist. he said no dental problems, but he felt that it was salivary stones in my parotid salivary glands and referred me to an ENT for a diagnosis. the ENT agreed with my dentist, and so it began.

here is the short version of what happens with I-131 ingestion. the I-131 is meant to kill any rogue thyroid cancer cells still present in the neck area. what it also does is hone in on the salivary glands where it is concentrated and secreted into the saliva. this appears to be dose related. NOW, not when i received my I-131 dose, the recommended max dose is generally 100 milicuries. the trigger dose for salivary gland issues, at least in a couple of articles that i have read, appears to be about 150 milicuries and above. other fun side effects from the I-131 include: dry mouth, taste alterations, increase in dental cavities, facial nerve involvement, yeast infections of the mouth, inflamed and sore mouth- to the extent of interfering with eating, and neoplasia( abnormal growth- a tumor, but not always cancerous). interestingly enough, there is now a drug, not available when i took the I-131, called ethyol ( amifostine) which is sometimes used to protect the salivary glands and kidneys. i am not familiar with this drug. i think it is given IV, but if someone reading this blog is about to get some I-131, it would behoove you to ask your doctor about this, and ask if you would be a candidate to receive this new drug.

so salivary stones and salivary pain and swelling may be due to thickened saliva and/or scarring of the salivary glands due to inflammation caused by the I-131. you might be asking yourself about now if i am having regrets about getting the I-131. and the answer is no. my thyroid cancer was aggressive ( papillary with follicular variant ) , stage 3. for a person who has a lower stage, less aggressive thyroid cancer, it would seem prudent to talk to the doctor about a lower dose of the I-131, if needed. some patients choose not to take the I-131, and that is an individual decision. my doctor and i felt that the benefits outweighed the risks of the I-131. i urge people to research and read all the material available  on the I-131, consult with your doctor, and then make the best decision for you.

so, what does one do who has salivary issues or salivary stones? an office visit with  a good ENT is a pretty smart starting point. i will use myself as an example when i am talking about treatment. we are all different, though, so what works for me, might not for someone else. also, i will mention here that there is laser treatment to unblock salivary glands. this is available, for the time being, only in larger cities. i am sure there are risks involved with this, as with any procedure, and i do not know the pain involved, the risks  or cost of this procedure. frankly, it could be more painful for your wallet, if you know what i mean.

what my ENT recommended to me was as follows: gentle massage, heat on the area, sour lemonade or sour candy, lots and lots and lots of water, and if needed, ibuprofen for pain and inflammation. over the years, i have noticed that certain foods tend to cause a "salivary gland flare" for me. these would be chocolate ( !) and highly sugared foods. there are others, but these are things that i have to be careful with. i can have SOME of them, but if i consume too much, i will usually have pain and inflammation in my salivary glands. prevention seems to work best for me. i also have problems if i do not drink enough water. i have purchased a few 24 oz water bottles, and i try to keep up with my water intake. this also helps with dry mouth. there are commercially available products that you can buy for dry mouth, but drinking lots of water seems to work best for me.

i hope that i have answered a few questions about salivary gland pain, swelling and stone formation. it can occur days to years after a single dose of the I-131, or not at all. it seems to occur in those patients who have  received a larger dose of the I-131. in the majority of cases, the salivary glands will heal on their own, requiring no further treatment. in others, me for example, it may be an ongoing problem. knowing how to deal with the symptoms, and even better,  preventing  a "flare" ( my word for this) seem to work best for me.what prompted my blog on this subject was the fact that i went months and months without a flare, and then had one a few weeks ago. also, a good friend of mine is dealing with this issue. if someone has further questions, i will be glad to address them if i can. but i do recommend that you see an ENT to get a definitive diagnosis as a starting point. see there, we are not on our own, and we have some direction home.