Delayed pain after RAI?

Hi. 

I've had medium dose of RAI last July. 

Swelling in my neck came next day and stayed with me for good few weeks. 

What was surprising to me was that my salivary glands started to play up after 2 months!

I've had swelling coming and going on both sides of my face, disgusting taste in my mouth, quite strong pain. Got antibiotics but they didn't do nothing so that only proved it was RAI that caused all that. Last few months it settled and now I am OK.

I have put warm compress on the cheeks which helped and drank a lot as felt I am not producing enough saliva. 

If you are worried I would contact my team to ask if it is normal but I am pretty sure it is. 

Take care x

Hi

I had a similar delayed experience ie after about a month totally dry mouth (as if sealed shut in a morning) and coated tongue and a little discomfort in the cheeks but went away gradually over about another month.  I used some special mouthwash and toothpaste which helped.

 IsabellFel Diane10 Thank you both for the replies. The dry mouth sounds terrible! I don’t think mine’s been dry as I feel like I have plenty of saliva, but I’ve just been really thirsty. Sounds like I’ve dodged a bullet!

My CNS seems to think I’m having an inflammatory response in my salivary glands, which sounds right given what you both experienced. She wants me to take painkillers regularly and call her again on Thursday.

I’m relieved it’s not something unusual and that it will go away on its own. And really glad that you’re both feeling better. Thanks so much for easing my worry! 

I have just had my second round of RAI last week and a high dose, so far so good.  After my first round in Dec 22 my neck did swell a little around the thyroid area after a couple of weeks, but it soon went down again.  I was told later that there was good uptake in the thyroid region so I guess this was the RAI just doing its job.

Hi

i had the medium dose this Tuesday, 3700, for the same type of thyroid cancer too. I also felt totally fine but I then started to experience pain, exactly like you. Like a burning and tight sensation.. I’ve been told it’s actually normal, and it’s similar to what radiotherapy patients experience. It can get worse before it gets better, so maybe you’re experiencing this? I was just about to ask the forum about pain and RAI then I saw your experience, so you’re not in it alone. Keep an eye on it, take some pain meds and call your oncology ward if it doesn’t ease off in the next week 

Hey! I haven’t experienced a dry mouth or any saliva gland issues yet… just quite a bit of pain. But I only had it 5 days ago. How do you know if you have saliva gland issues? I’d like to know what to expect if I do experience this as i didn’t know it could be a delayed response 

Thankyou for sharing x