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What to expect from RAI treatment for pap. thy. ca?

I will be having my scans on 1/12 and hopefully getting my dose on 1/14.  What should I expect?  How will the treatment make me feel?  I know I should have lots of water to drink and suck on sour candy.  When should I start sucking the candy?  I have read different opinions.  How long were you isolated?  Should I purchase a cheap pillow that can be thrown out afterwards?  Should I place plastic over my mattress?  Can I use the telephone and computer?  I feel lousy right now and just want to prepare now since I know I will be feeling worse as each day goes on.  

Thanks!
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Avatar universal
hank you all for your advice.  I have printed out this thread and I plan on preparing this week so I will be ready to do this next week.  This is such a wonderful supportive place aan I am so lucky I found it!!  

I will keep you all updated!

Hugs!!
Helpful - 0
Avatar universal
I totally agree 100% with blksapphire but I felt as if I was going to choke with sour candy so instead I sucked on a slice of fresh lemon every 1/2 hour.I even squeezed the slice into the water bottles (I too, brought a 24 bottle slab of small bottles).
Sounds yukk but believe me, by the end of it ...it actually makes the water taste good as you feel like a Goldfish after the 48 hours of drinking water consistantly to flush out any excess RAI.
I had no probs with it .
I waited for the 'green things' to grow out of my ears...they didnt lol.
I waited for 'something' to happen....it didnt.
All I got about 6 hours later was a hot uncomfortable feeling under the ears on the neck.
I solved that problem by wrapping a wet towel around my neck.
I took paracetomol for that and within 2 hours, the sensation had gone.
RAI was a breeze for me.
I had anti-nausea pills ready but wasnt nauseous.
You will be fine.
Dont 'wait' for something to happen....because it just wont happen.
Within a week, I got a slight fast heartrate but took beta blockers as this was the thyroid 'dumping'.
I was hypo within 5 weeks post RAI.

The worst thing that happened was I have never drank so much water in all my life and felt bloated like a golfish !
I 'flushed' by urinating all the time and kept a bucket of bleach water in the toilet to wash the toilet down after flushing twice after using the toilet.
I live alone so really had no isolation problems.
Stick with blksapphires advice and you will be fine.
Hope that helps.





Helpful - 0
451191 tn?1264432890
I have had NO salivary or taste issues whatsoever.

It will be OK.  It's not fun, but it will really only be one day of feeling bad (if that, some people are fine and don't feel sick).

I honestly think going hypo is probably the worst and with Thyrogen we don't have to do that.  If only they could find a way to deplete the iodine in our systems without going on that diet...

Hang in there and stay on here and ask questions and let us know how you're doing.  It really helps.
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Avatar universal
Hi~

Did you have any salivary issues afterward?  Taste issues?  I am scared.

Thank you!
Helpful - 0
451191 tn?1264432890
Like KelDC, I was VERY nauseous and was throwing up about 3 hours after I swallowed my 75 mci of RAI and continued to get sick for the rest of the day/night.  I wasn't hypo either, I had Thyrogen shots and I was just really sick that first day.  I started to feel better day by day.  

My doctor recommended waiting 72 hours before sucking on the sour candies.  He said there really isn't any proof that it works and even that sucking on them earlier can encourage the radioactivity in your system to collect in your salivary glands.  I ended up not using the sour candies at all.  

My hospital recommended isolating for 72 hours, but I opted for a week to keep my daughter safe.  I did see her after 72 hours, but didn't hug her and kept my distance from her.

As for plates and utensils I was told NOT to use plastic because it would great more waste than necessary.  I was told to pick a set of utensils and plate, etc. and ONLY use those.  The radioactivity in RAI is water soluble so when you clean your own set it will be washed away whereas plastic plates and utensils will hang onto the radioactivity longer.

I bagged up any waste that I created and held onto it for two weeks before throwing it out.

Try to look at the isolation period as a time to reflect and relax.  We go through a lot dealing with this and it's important to acknowledge whatever emotions we may have as a result.

Oh, and I had to maintain the LID until 72 hours after the dose.  It was odd, I had gotten so used to paying so much attention to what was in what I was eating for three weeks it took some getting used to eating normally again!  I don't remember what my first meal was, I just remember putting cream in my coffee and shedding a little tear :)

All the best to you!
Helpful - 0
Avatar universal
I lost my sense of taste for about 3 months. And my sense of smell got all whacked up. Things I normally liked the smell of made me want to barf.  And I think you can ask your endo for the anti nausea stuff, or your regular doc, whoever you'll see first.  I didn't get any of the anti-nausea meds and I really wish I had. I also had/still have issues with dry mouth that have not been resolved. It comes and goes since the RAI. Be very aware of that because it can seriously jack up your teeth.  Right after the RAI I had a lot of teeth pain because of the dry mouth. I'm now on a first name basis with my dentist and a complete flosssaholic!  Looking back I don't know that I would have chosen to do the RAI knowing what I know now and all that I've been through.  Mine was "optional" but recommended even though the cancer was contained.  I don't know what your situation is but really make sure you need the RAI because it has not been a picnic. Most people have no problems with it all, I was just one of the lucky ones.
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Avatar universal
Would I ask my endo, nuclear medicine doctor or my primary care doctor for the anit-nausea meds?

Thank you all so much!  I am starting to get scared and worked up.  Plus I can feel the hypo coming on adn I am on the blah LID diet!!  

Did you lose your taste or have problems with the salivary glands after.

Thank you again!!
Helpful - 0
425199 tn?1313068997
You've gotten a lot of good info here so far!  My biggest problem after my RAI (100 mCi, May '08) was nausea.  My doctor gave me anti-nausea meds, but he told me not to start them until after dinner the day I got my RAI dose.  I was throwing up well before then!  Ask if they'll give you anti-nausea meds, and don't wait to start them.  Some people don't have nausea at all, but it is awful for the ones that do!  

I also had some meds for my salivary glands,and I was told to use sour candy starting the next morning.  

I wore plastic gloves to be on the computer or use the remote or telephone. I had a canister of sanitizing wipes at all times to wipe down anything I inadvertently touched. I covered my bed and pillow in plasticand used disposable utensils and plates. I drank a TON of water and ginger ale (nausea!), read a bunch of magazines, and slept a lot.  if you have a second bathroom, claim one for yourself only during your isolation. Otherwise, flush twice and clean it every time you use it. Ditto for the shower.  

Best of luck to you - I hope you have a nausea-free, easy time of it!  =)
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Avatar universal
You can expect nausea. Ask for something for it prior to going home so that you have it just in case. I know a lot of people don't have the nausea but I had it horribly.  I think it was a combo for me of being so hypo and then adding the RAI on top of it.  I also had a lot of chest pain that sent me to the ER twice.  Again though, I think that was from the hypo state and not the RAI.
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Avatar universal
RAI Pill dated Sept 14 08 from deaniegirl has an excellent anedoctal answer to RAI

xx
Helpful - 0
427555 tn?1267553158
I did suck on sour candy after my RAI and I have have permanent problems with my saliva glands.  Dr Ain does not recommend the sour candy.  My glands did not get blocked until 6 months after Rai, but to this day I produce very little saliva which makes chewing difficult.  I had a dose of 200mci.  Do you know what your dose will be? I was isolated in the hospital for 2 days and at home for 1 week. Good luck!
Trish
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369861 tn?1306275686
The do's and don'ts of RAI treatment:  At least this is what I was told by my endo dr and the doctor who gave me the dose of treatment.

DO:  
1)  Since you only have one bathroom, purchase some plastic, cut it to size to put over the seat for each use and flush at least two times when finished.
2)  Drink lots of water: I purchased a case of single bottles.
3) do suck on sour candy
4)  if you must stay at home, isolate yourself in your room with everything you will need prior to taking the treatment, so that no one has to enter the room.  They can leave your food by the door.
5)  bur plastic cups, plates and utensils prior to treatment and keep a plastic trash bag in your room.   (if possible, double the plastic bag)
6) byuy some books that you don't mind tossing in the trash after this is over.
7)  do cover your cell phone and tv changer in plastic.
8)  do cover your mattress with a plastic cover.
9)  do wash your clothes seperate from others.
10)  do all your shopping and washing before the treatment so the family wil have their snacks and clean clothes.
11)  buy throw away gloves  to use since you only have the one bathroom.
12)  Most of all do all of this prior to the treatment.


DO NOT:

1)  do not sleep in the bed with anyone
2) stay away from small children, babies and pregnant women.
3) do not prepare any food.
4) stay away from your dogs and cats
5)  do not share any foods

I hope this helps.
Take care and keep us posted!
Terri
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Avatar universal
bump- thanks!
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