RAI Side Effects

Hi everyone!
I'm a 20 year old male with metastatic papillary thyroid cancer! I've had a TT, neck dissection, and one round of RAI (300 mCi). My RAI was back in August, and I'm experiencing some extremely unpleasant side effects. My salivary glands are constantly swollen and painful, and my mouth is extremely dry. I know this is relatively common with RAI, I'm just wondering if anyone else has experienced it and, if so, did it clear up eventually? Thanks so much!!

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  • Hey Henry, Nice to meet you. I am sorry you are having unpleasant side effects from RAI. I have that as well. Because we had such high doses of RAI... we are going to have continuous problems with our salivary glands. Using heat packs help somewhat, unfortunality even though its so painful, sucking on the BRACH Lemon Drops will help. As my Doctor told me. Using Biotene mouth wash helps as well. I have a pdf that I can send you via email if you are interested in how to massage your glands.You should do this daily even though it is so painful. I suffer from salivary gland disease. 

    Unfortunality, for me my salivary glands are burnt and destroyed from both rounds of RAI.  If you are in NY I can give you my Doctors name. I am not trying to scare you at all. Unfortunality, DOCTORS don't tell you SIDE EFFECTS.I just really wish my surgeon would of told me the side effects before hand.

    The only option for me now is radiation or having my salivary glands removed. Both choices are extremely hard for me and very dangerous. But this just my case. I am not saying this will happen to you. I have been suffering with salivary glands since 2012. I have been on countless rounds of antibiotics for this. 

    I saw my Doctor last week and he said unfortunality salivary gland disease is permanent. In order to find out if you have salivary gland disease you really should get this procedure called " Salendoscopy".  Most DOCTORS DO NOT DO THIS PROCEDURE. But, this procedure really helped me figure out why I was having severe infections, swollen glands and so much pain.

    PLEASE PLEASE FEEL FREE TO EMAIL ME. I would love to give you the tips. I have them as a pdf. It is very helpful even though massaging the glands hurt. 

    I wish you the very best!!   My email is danimaria11@gmail.com  Please email me anytime.

    -Danielle 


    enakynnek
  • My dr recommended to try benedryl for salivary swelling. I haven't needed to try yet because I am not currently experiencing any side effects as I had a very low dose rai on 12-17
    enakynnek

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