Wednesday, August 09, 2006

Dear Arielle

This message is for Arielle of Illinois... who will soon take her first radioactive Iodine treatment. She had asked some questions about my I131, and since I can't find her email or blog address, this post is her answer.

The first and most important thing I want to tell you is that if you have any questions about your treatment, call your endocrinologist's office and ask them. Make a list and leave a long message. You have a right to know about all aspects of your treatment, including what to expect. Don't think that it will make you look silly for not knowing -- really they're the silly ones for not telling you important things from the start.

I say that because my RAI treatment was different from what you will be expecting because in Oklahoma, ablation doses can be given on an outpatient basis. I stayed in my apartment in an extra bedroom, away from my husband and the cat. You mention that you're going to be hospitalized for your ablation dose; their rules will more than likely be more strict than mine were. (That's why it's a good idea to go ahead and ask them what you should expect.)

I'm supposed to be on the low iodine diet two weeks before the RAI and the week of the treatment. I'll stop taking my short-acting thyroid medication when I start the diet that I lovingly refer to as 'sticks and twigs'.

If your treatment is like mine, your first "dose" will be a scanning dose. Mine was 4 millicuries, which is just a spit in the bucket compared to the ablation dose (my first one was 100 millicuries, and I think the next one will be 200 mci.). I'll still be able to work until I get the ablation dose, but I'll have to stay away from pregnant women, babies, and my cat for five or six days. That's my best bet why you have to be away from your kids as of the 17th... and why you'll be hospitalized on the 22nd. (My test dose is on September 11th, and I'll return on the 13th for my scan and ablation dosing.) In short, you might be getting the small "scan" dose on the 17th, and your ablation dose on the 22nd... but like I keep saying, just call and ask them.

Our ablation experiences will be different if you'll be hospitalized for yours. They will want you to take multiple showers each day and clean your own bathroom, since the radiation will get out of your system through your sweat, saliva, and urine... probably breast milk, too, since you'll have to, as you so eloquently put it, "pump and dump". You won't be able to have any visitors for several days, so go ahead and make a list of people who can call you to entertain you. You'll have a television, but that gets old after a while. If you bring books or magazines, there's a chance they'll make you throw them away when you are discharged from the hospital... which is why it's a good idea to call your endocrinologist and ask what you can expect. If they won't let you take magazines home, they probably won't let you take a cell phone or your laptop, either. I don't know if they'll let you take your pump - or maybe the hospital has one you can use? ... just ask them what they expect you to do in a room for several days by yourself.

That was probably the hardest part for me -- just being by myself. I'm not exactly a social butterfly... but I have a social job, and The Hater and I really like hanging out together. Being alone in a room got old. Bleh.

Since you take the RAI by mouth, some of the radiation can get into your salivary glands. I've read some poor research saying that you should frequently eat sour candy to help excrete the radiation from your salivary glands... I had lemon drops and sour gum that I tried to nibble on for a few days. You should also drink lots of water to try to flush it from your system.

I didn't know what to expect as far as the radiation went... but it was really not halfway as exciting as I thought it would be. Sometimes in the mornings I'd wake up and have a funky taste in my mouth, but it would generally go away after I brushed my teeth and ate something. I had only a little nausea, but it was super minimal, to a point where I could will it away and never actually threw up. Most people don't have any nausea or problems with it.

Let me know if you have any other questions or need anything!

PS: Have you been to the thyroid cancer webpage? They have some information about what you can expect with a hospitalized RAI, but again I'd like to stress that you should ask your endocrinologist about what you can expect. We pay them enough, the least they can do is answer some questions!

I was really confused about my first RAI treatment, too. This is a link to a post I wrote back in May during my first RAI treatment. It's about how crazy it was that I never knew what to expect. Just know you're not alone in your bewilderment...

PPS: You're officially EMPOWERED. Go forth and make a list so that your foggy brain doesn't get lost when you ask your endocrinologist those questions! Make them earn that copay...


Arielle said...

You are totally awesome! I can't thank you enough for this post. BTW my email is and here is the link for my blog

You are the best!!!
Thank you Thank you Thank you!!!

Arielle said...

I did talk to my endocrinologist yesterday. They did labs again and I asked him if it was possible to push the treatment back any farther because we are moving at the end of this month, which is 1 day after I will be released from quarantine. He refused that idea completely because of my blood pressure and the fact that I have already been off synthroid for 4 weeks already.
I found out that I will go in on the 14th and take the small iodine dose, back on the 15th for the thyroid scan. Then I take the huge iodine dose on the 17th and go back in to be admitted on the 22nd. I will be allowed to take in candy and gum and magazines that I can throw away and a manual breast pump that can also be disposed of. The hospital will give me another hospital grade pump when I leave that is not contaminated with radioactivity. Still no one can give me an answer as to whether I can continue breastfeeding after I am cleared. I have a call into the LLL too and I have my own personal friend who is a lactation consultant that is trying to find an answer for me. The endocrinologist nurse thinks I cant nurse for 6 months after the ablation, the same for getting pregnant. Well I dont plan on the pregnant part, but Whats the point of pumping and dumping if its not safe to nurse for 6 months after the ablation?

I have been looking all over and besides being locked in a room for 2 days, I still dont understand what the ablation/radiation is. Somehow I imagine being stuffed into a tunnel and a ray gun pointed at my head until I glow neon green. Then they stuff me into a padded room for 2 days and lock the door. If I take the giant dose of iodine on the 17th, then it seems like I should be in the hospital that day instead of 4 days later.

Lukily the endo nurse told me I dont have to eat the sticks and twigs. They dont require me to do the low iodine diet, they just said to cut back on fries.
I think I can handle the alone time, I have 2 kids now and am actually kind of excited about the rest, even though I may be too worried about them being away from me to relax any, I still could use the break. But I will terribly miss my newborn cuddle time.

The other issue of going home and having my husband waiting on me makes me nervous. I am going to stay in my room for 7 days while he brings me food and drink and entertainment?? Right. LOL Its a good thing I like TV.

Did you feel like doing anything much after the radiation? Like I know I will be in my room, but do you think I will be able to pack the room for the move then, or should I go ahead and do it before while I am hypo? Haha, it doesnt seem like either is ideal, but you gotta do what you gotta do. My husband will be packing the rest of the house and I am grateful to get out of that.

Now I have to make a list of instructions on how to care for my kids for all those grandparents so I dont forget to tell them anything important... and my kids get returned to me in the same great shape they leave in.
Thank you again for all your information!!

genderist said...

The ablation is just a larger dose of the radioactive iodine isotope. I was expecting a big pill, but it was a small capsule... very doable.

Your thyroid cells are the only cells in your body that like iodine... so as your body processes the pill, your thyroid gland will suck up the radioactive iodine isotope... and as the isotope goes inside the cell, it ablates, or kills it. That's the ablation.

And you just get to sit around and be bored while all that happens. :)