Radioactive Iodine (RAI) - experience??

Hi

I'm replying to your post in order to 'bump' it back to the top of the discussion list in the hope that someone who has had RAI will pop on and tell you about their experiences.

If you haven't tried this already if you type 'radioactive iodine' or 'RAI' into the search bar at the top of the page it will bring up all previous posts in which this treatment is mentioned. You could then have a read through some of them and reply to any of the more recent ones if you think the poster can help you further.

While you're waiting for replies it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi NSa

I had RAI last July, I was in the specialist room for 2 nights-3 days, it is a special suite of bedroom, bathroom and a sort of ante room where they leave your food and i had a small fridge in there so took some treats in with me. I had my ipad and phone, the floor is covered in clingfilm and they also wrap your phone and ipad in it. Once you have have taken your RAI dose you cannot leave the room until your levels have gone down, they advise to shower twice a day and drink lots of water, some also recommend sucking sour sweets. I downloaded some films and some comedy series on my tablet and I was pleased as my tv did not work. I had a scan before leaving and then another a couple of days after that to check for traces. Once at home, I used a separate bathroom for a week and flushed toilet twice, also slept in a separate room and did not go near any young children for a few weeks. The Nuclear medicine team are really lovely and helpful and will advise you on their particular procedures. There is normally a little booklet from the hospital about RAI treatment.

I was a bit tired for a while but no other effects.

Good luck with your treatment

Hi NSa 

2 months ago I had the 3.7 dose, the capsule was small and easily swallowed despite feeling anxious. My room had the bed, kettle, tv, own shower room, fridge, fan and some books and puzzle books left by previous ‘residents’. I took in my iPad, phone, book and puzzle books, som sour sweets to help flush the radio iodine from salivary glands and a couple of pieces of fruit incase I was off my food. The treatment was on a Monday and I went home Wednesday afternoon. The nuclear medical team were so lovely and reassuring, after the treatment no one can come far in your room until your levels are low enough. I was given extra towels and bedding, told to shower a few times a day and drink lots. Unfortunately I had some sickness but the nurses can give meds that help a lot with that of you need it and it doesn’t last too long. My salivary glands also swelled the following morning which was uncomfortable but a few hours after some painkillers and sour sweets it had passed over. I think the worry beforehand is the worst part, once admitted they said to me “you just have to swallow a capsule then chill out for a few days” Try and look at it as a bit of time for yourself :) I only had to be child free for a couple of days after I returned home and used a separate toilet than my children for a little while after that.

I hope it all goes well for you,

Jo :)

Thanks a lot. Its helpful to know as I have young kid at home.Also not sure in my dosage still.But gives a good idea as to what to expect and do.Are there any side effects for RAI longer term which you might know??

Thanks

I don't really know about long term effects, I was just told that of someone had to have it a few times then there might be some. Im sure the oncologist or nuclear medicine team could answer that. Pop it on your list for when you next speak to one of them. Do you have a date for your treatment yet?

Thank you.

Not yet.Apparently the referral was not done by ENT so far.So guessing another 2 weeks for my first appointment with oncology. The treatment will follow even later, I guess.

Hi there. Sorry it’s taken a while to respond. I had RAI last October in the Beatson in Glasgow. It was all explained very clearly to me. If I were to offer any advise I’d take 10 minutes with a pen an paper and note down questions or concerns. It’s easy to forget when you get there. My dose wasnt at the top end but it was easy and I had no side effects other than being a bit more tired than normal for a few days afterwards. No further treatment needed and just regular follow ups now. Good luck and best wishes.