Rai Questions

My daughter just had her second WBS, first was 9 months ago with little uptake (.025) and escaped with no RAI treatment.  This scan uptake was .2 with neck us/chest xray clear.  Because uptake was almost 10 times greater within nine months, they have now chosen to do RAI.  I wish they would have just zapped it then....Just reading the stories of RAI kind of scares me for her.  Is there anything I should know to help her through it, they said I could stay and be with her.  I am concerned about her salivary glands or anything else that can go wrong.  Any info would be greatly appreciated.

Concerned mom:(

How old is your daughter?  For me, the RAI wasn't that bad.  It didn't make me sick or anything.  The worst part was being hypo and then not being able to be around anybody...that was the hard part b/c of course when you don't feel good, you want comfort, but for this you are on your own.  You may want to double check with your doctors about being able to be with your daughter...every person I know that has had the RAI treatment done has been told to be in some form of isolation.  If you are around your daugher during this process you run the risk of damaging your thyroid.  I'm sure everything will go fine with your daughter...by no means is this a fun process, but at least it's not chemo.  Take care and hang in there!!!

If your daughter isn't really young, don't plan on "being" with her.  For at least 72 hours she needs to be in isolation.  You can be in the house to help her like my husband did.  You can cook for her and converse with her as long as you're not in the room with her.  It's not safe to be with her.  If she's really young, they'd keep her in the hospital to help her out instead of sending her home.

RAI isn't bad at all.  I had no side effects.  it was a pain to have to wash my clothes and linens every day, wear latex gloves with all electronics, shower three times a day and flush three times.  But that was the worst of it.  Make sure you use paper plates cups and silverware.

She'll be fine. If she does have side effects they are just flu like symptoms; nothing serious.  I'm surprised they didn't do RAI to begin with.  That is what will kill off all remaining thyroid cells; cancerous and non-cancerous.  But at least they are doing it now.

Good luck and let us know if you have any other questions!

My daughter is 17, was diagnosed and had surgery at 16.  She is being treated at Children's Mem. in Chicago, which is suppose to be one of the experts in the nation?  I read a lot more on here than I post, I guess just to keep myself informed of how others handle, cope, and to learn more.  I don't know if it is because they are giving her a small dose (100) that I can be around her, but I know everywhere I have read on here almost everyone was isolated.  She has a sister, 16 and two older brothers at home.  Her stay in the hospital will be just over night.  Her endo told me I could stay with her, the only precaution is she could not be around little children for a week.   That's whats so frustrating about this, so many different doctors have different theorys, what's the right thing to do?   

 

On 7/24/2008 vlcomb wrote:

My daughter is 17, was diagnosed and had surgery at 16.  She is being treated at Children's Mem. in Chicago, which is suppose to be one of the experts in the nation?  I read a lot more on here than I post, I guess just to keep myself informed of how others handle, cope, and to learn more.  I don't know if it is because they are giving her a small dose (100) that I can be around her, but I know everywhere I have read on here almost everyone was isolated.  She has a sister, 16 and two older brothers at home.  Her stay in the hospital will be just over night.  Her endo told me I could stay with her, the only precaution is she could not be around little children for a week.   That's whats so frustrating about this, so many different doctors have different theorys, what's the right thing to do?   

I had the same dosage and was in isolation for 72 hours.  I've never heard of anyone with that dosage not in isolation.  I couldn't even be around my pets.  I'd get a few more opinions.  Maybe speak with the nuclear medicine department.  They were the ones that usually give the instructions anyway.  If a patient is in the hospital for the isolation, it's true isolation so your dr's instructions are extremely confusing to me.  Never heard of it.  Sorry, but I'd question that.  Especially since you have other children.

I agree with the above post.  I don't want to scare you, but that is crazy that you were told you could stay with her.  I had 75milc and was isolated for 4 days.  Even after that I had to keep a safe distance from my family.  I stayed in our guest bedroom, and used a seperate bathroom from the rest of the family.  By letting your other children be around her you could damage their thyroids.  I know it's hard for you, I am sure you want to protect her, and be with her, but please get another opinion on this one.  Good luck, I am sorry you and your daughter have to go through this.  Skylog