Any advice before RAI treatment???

kb55 said:

post RAI
I'm new at this & scrolled down as you suggested to read postings. Thank you for your update & like you, I don't seem to be experiencing any major symptoms with my rising TSH levels. I expect that to change any day now, but like you I'm trying to remain active, eating healthy, but I am following the low iodine diet, per my endo's instructions. Sounds as though your nausea wasn't too terribly bad, so I'm hoping to experience the same. I've stocked up on sugarless sour candies & chewing gum. Will also stock up on 7-up, just in case. I'm expecting to have the RAI on outpatient basis either Wed. or Thurs. of next week (25th or 26th), but that of course will depend upon the results of my TSH levels on Monday. I'll keep you posted & thanks again for your insight.
Kathy

hi
hi kath
are you done with your RAI? me? im scheduled this month at 26, hope you update me wuth your experience... thank you

smileyscar said:

RAI treatment
I am going for my pre RAI shots tomorrow Monday, March 14, 2011, and the other shot on Tuesday. I will be taking the Iodine pill on Wednesday. I understand that I still need to continue on the LID. The info on the web are very contradicting. If anyone has a better more scientific website that really tells you the iodine content of food, it would really help me and others. Like everyone says, the doctors do not give you too much info. I was not even given a diet, I was told to look it up on Google. What kind of crap is that. We are already scared shitless, and we have to find it ourselves? We have to be our own advocates, unfortunately, because not even the doctors give a crap. It is just a job to them; and I am just one more person in their workday.
I will put a comment after my treatment for those who are as lost as I.

Thanks.

RAI and LID Diet
The best source for the LID diet is on the www.thyca.com website. It outlines the foods you need to avoid and the foods that are okay. It is in the cookbook that you can download in PDF format. This is what all of us Thyroid Cancer patients use as a reference. There are lots of posts on this forum relating to RAI treatment and the LID. You will mostly avoid Iodized salt, potato skins, strawberries, any type of pre-made foods, frozen or restaurant. I hope this helps. It has been my best friends for the last year and a half. Best of luck to you.
Sincerely,
Julie-SunnyAZ

Baldy said:

RAI
Hi SandyKR,

I'm glad to hear your RAI went so well.

In one respect mine will be easier, I will not have to go off Levothyroxine as a preparation. Instead, on the third week of LID, I will be given two Thyrogen injections Monday & Tuesday morning. Tuesday afternoon they'll do a Stat serum hCG TSH blood test to make sure my TSH levels are high enough, then a 2 mCi 123-I dose in preparation for a body scan Wednesday which will be used to determine the 131-I dose. Thursday @ noon more blood for Serum Thyroglobulin levels. Then @ 1 pm the 131-I treatment followed by a physicians appointment and resumption of a normal diet. One week later, a post treatment body scan followed by another physicians appointment.

Please forgive me for going into detail for the RAI regimen, but it seems that most people here are having to go off their thyroid replacement hormone in preparation for RAI. I thought it would be a good idea to tell everyone exactly what I will be experiencing. Unfortunately I don't know the amount of Thyrogen in the injections.

I will check back in to let everyone know what side effects I will have, if any. I've read that nausea is not that common but salivary gland swelling is.

Baldy

for my year out scan
for my 1 year out scan I will be getting the thyrogen injections as well

Remember stay on the LID untill the doc tells you that you can go back to normal diet.

I dread my next run through on the LID but at least i will get the shots this time

thanks for the info and keep us informed on any problems with the shots

Craig

smileyscar said:

Thyrogen Shot
Thanks Sunnyaz for your input on the diet. I do have the pdf and I found some good info on the Livestrong.org website too, but also some contradictions there. I guess it is all in the amount that you are supposed to use. I'll get better at it.

Anyway, to keep everyone up to date with the shot: today March 14, 2011, I had my first shot of Thyrogen and it went well. I had a slight headache about half an hour after the injection, and later I got a little weak. It kind of felt like a very mild feeling when you take Nyquil. After eating I got a little better, but still a bit tired.
Other than that, nothing else. I will get the second shot tomorrow, then wednesday, the iodine pill. Will keep posted.
Thanks everyone for listening. I hope at least it will help someone.

Thyrogen Injections
You are welcome. The headache is normal. You can take Ibuprofen (as long as you aren't on blood thinners, Acetaminophen if you are)about a half hour before your next injection to combat this. Tired is normal too. Nothing you can do about that. It's only temporary. FYI, it's not just one pill. Depending on your dose, could be six or eight pills. I know they tell you to drink lots of water after your dose, just be careful not to go overboard and make yourself nauseated. About eight ounces every two hours is more than enough. Keep sucking on candies that make you salivate as long as you are awake. This will stimulate your salivary glands and reduce damage to them. Good luck and keep smiling! This will be over soon.
Julie-SunnyAZ

smileyscar said:

After RAI treatment
Hi to anyone listening:

I am already back at home from RAI. It went well. I did not get sick. The nuclear medicine doc told me he had not heard of anyone getting sick from it, so that made me feel better before I took it and it calmed me down. All I did was watch TV and drink water; a very boring vacation. For anyone curious like me: the room had plastic on floor where you would walk all the way to the bathroom and anything you would touch. They put plenty of water, ice and juices. I would have to throw away my food tray a red bin. They had another red bin for hospital garbage like gloves, thermometer plastic covers, etc., and two white bins for linens. The nurses would only come in when bringing you the meals, one breakfast, one lunch, one dinner. I recommend to keep a fruit or something from that meal for later as a snack. I know in my hospital I would not get any more food; only 3 meals. The only discomfort was the Intravenous thingy they put on my hand which was uncomfortable, but other than that it I was fine.

Regarding the food: they had it labeled LOW IODINE, no salt, but I don't think the kitchen knew what low iodine diet was. I was served broccoli once. I was given white bread with margarine "Promise" brand which is made "mainly" from vegetable oil, but also contains milk and salt. So I could not eat it either. So be cautious and informed about what meals you can and should eat. Nurses don't know.
The nuclear people came yesterday before I was released and measured the levels with a geiger meter, (I think that's what the guy said) and told me I could not go home yet. (that was at 12 pm) but he said someone would come at 4 pm to measure me again. His assistant came in at about 5 pm and measured me again and it was a 4, which I believe was low, so they discharged me.

I do have some metal taste in mouth, but other than that, I am good. I will post more later on what to do once at home, from the info they gave me.

Thanks for listening and hope it helps someone.

Smileyscar

I had the same issue
Glad you are doing well. I had the same issue with food while in the hospital. They thought low iodine meant low salt. I had to explain what it really was and they still didn't get it.
But I did get sick from the radiation so I didn't eat much (and not from drinking too much water, only had one bottle before I lost my stomach).
And I'm an extremely picky eater so I packed a lot of food and had the nurses place it in the fridge and they would bring me some when I asked.
The funniest thing from my hospital stay was the look on my sisters face when she came to pick me up and I asked her where my clothes where (since you can't take anything out of the room with you). She forgot to bring me clothes. Luckily the nurses saved her and gave me scrubs to wear home. Every time I think about that moment and the look on her face it makes me smile. We laugh at it now.
It may take a little while to get rid of the metal taste but it does go away. And you will soon enjoy the taste of real food again.
Keep us updated.

smileyscar said:

After RAI treatment
Hi to anyone listening:

I am already back at home from RAI. It went well. I did not get sick. The nuclear medicine doc told me he had not heard of anyone getting sick from it, so that made me feel better before I took it and it calmed me down. All I did was watch TV and drink water; a very boring vacation. For anyone curious like me: the room had plastic on floor where you would walk all the way to the bathroom and anything you would touch. They put plenty of water, ice and juices. I would have to throw away my food tray a red bin. They had another red bin for hospital garbage like gloves, thermometer plastic covers, etc., and two white bins for linens. The nurses would only come in when bringing you the meals, one breakfast, one lunch, one dinner. I recommend to keep a fruit or something from that meal for later as a snack. I know in my hospital I would not get any more food; only 3 meals. The only discomfort was the Intravenous thingy they put on my hand which was uncomfortable, but other than that it I was fine.

Regarding the food: they had it labeled LOW IODINE, no salt, but I don't think the kitchen knew what low iodine diet was. I was served broccoli once. I was given white bread with margarine "Promise" brand which is made "mainly" from vegetable oil, but also contains milk and salt. So I could not eat it either. So be cautious and informed about what meals you can and should eat. Nurses don't know.
The nuclear people came yesterday before I was released and measured the levels with a geiger meter, (I think that's what the guy said) and told me I could not go home yet. (that was at 12 pm) but he said someone would come at 4 pm to measure me again. His assistant came in at about 5 pm and measured me again and it was a 4, which I believe was low, so they discharged me.

I do have some metal taste in mouth, but other than that, I am good. I will post more later on what to do once at home, from the info they gave me.

Thanks for listening and hope it helps someone.

Smileyscar

After RAI Treatment
Thanks guys for the support even if it is a comment here. I have one more day of seclusion and then on Monday I go do a full body scan, which sounds very scary to me. But I must endure it as part of life. One funny thing is, I love metal music, and now I can say that I love metal so much, I can taste it. Hee hee.

Thanks for listening.

)

smileyscar said:

After RAI Treatment (at home)
I know I said I was going to share info on what to do once back at home from RAI. I received info from the hospital and it is kind of same info you see on the internet during your own research, and some of my own comments.

It is said that the amount of radioiodine in your body during the treatment is small. Although there is no evidence that the radiation from this amount of radioiodine will cause any problems, you should still minimize exposure, no matter how small. My view is since we don’t know how we got this disease in the first place, we should follow rules, because it could have been from some careless person.

From my readings, It is said that exposure to others can cause their thyroid to pick up the radioiodine. That’s why stay away from children, pregnant women, and older folks that may be vulnerable, and even pets, especially cats. (Their thyroid can pick up the radiation)

It says that the radiation received is very small, similar to the radiation from medical and dental X-rays which are the most common and familiar sources of external radiation exposure. (but think about it, why do we have to put a lead vest on, or the tech walks out of the room when we have X-rays done?)

1-Distance--the greater the distance, the less radiation.
2-Time--radiation exposure to others depends on how long you remain close to them.
3-Hygiene--wash hands when using bathroom, blowing nose,scratching, etc.

I asked the nuclear tech about the sheets on my bed after the treatment, and he said it would be better if you use an old sheet, and then discard it after the treatment. Although it says to wash your clothes separately, I would guess you could wash the sheets also, several times, since the radioiodine disappears by itself in time. Its quantity is reduced by one half every 8 days.

Sorry for the long note, I had to cut it as short as I could. I hope it helps someone.

RAI TREATMENT
I AM GETTING READY TO START THE LOW IODINE DIET FOR 9 DAYS BEFORE RECEIVING RAI TREATMENT -150, HOWEVER THEY MEASURE RADIOACTIVE IODINE. (I'M ABOUT 140 LBS)/ AND HOSPITAL ISOLATION. I HAD SURGERY 4 WEEKS AGO REMOVING THYROID AND 28 LYMPH N0DES, 6 WITH CANCER. WAS TOLD I WOULD PROBABLY BE THERE 2 NIGHTS. I AM WORRIED ABOUT GETTING NAUSEOUS AND THROWING UP. MY THROAT STILL FEELS SWOLLEN, I FEEL LIKE I WOULD CHOKE. HOW MANY PEOPLE WENT THROUGH THAT? HOW SICK DO YOU FEEL? WILL MY THROAT SWELL EVEN MORE? I'M SO DREADING THIS. ALSO, IS THERE ANY BREAD THAT YOU CAN BUY TO EAT ON THIS DIET? I'M NOT MUCH OF A COOK ANYWAY. I LIVE ON PIZZA, CEREAL AND CHOCOLATE MILK! I HAVE READ THIS WHOLE BLOG AND APPRECIATE ALL OF THE INFO YA'LL HAVE PUT OUT THERE. I HAVE A GREAT DOCTOR, BUT THEY DON'T GET INTO THESE KINDS OF DETAILS.

cfarris451 said:

RAI TREATMENT
I AM GETTING READY TO START THE LOW IODINE DIET FOR 9 DAYS BEFORE RECEIVING RAI TREATMENT -150, HOWEVER THEY MEASURE RADIOACTIVE IODINE. (I'M ABOUT 140 LBS)/ AND HOSPITAL ISOLATION. I HAD SURGERY 4 WEEKS AGO REMOVING THYROID AND 28 LYMPH N0DES, 6 WITH CANCER. WAS TOLD I WOULD PROBABLY BE THERE 2 NIGHTS. I AM WORRIED ABOUT GETTING NAUSEOUS AND THROWING UP. MY THROAT STILL FEELS SWOLLEN, I FEEL LIKE I WOULD CHOKE. HOW MANY PEOPLE WENT THROUGH THAT? HOW SICK DO YOU FEEL? WILL MY THROAT SWELL EVEN MORE? I'M SO DREADING THIS. ALSO, IS THERE ANY BREAD THAT YOU CAN BUY TO EAT ON THIS DIET? I'M NOT MUCH OF A COOK ANYWAY. I LIVE ON PIZZA, CEREAL AND CHOCOLATE MILK! I HAVE READ THIS WHOLE BLOG AND APPRECIATE ALL OF THE INFO YA'LL HAVE PUT OUT THERE. I HAVE A GREAT DOCTOR, BUT THEY DON'T GET INTO THESE KINDS OF DETAILS.

Hi cfarris451
Regarding the bread. No, I have not found one on the market that doesn't have salt or iodine. You can buy a bread machine and it's much easier than baking. Just use non-iodized salt. Then you can buy all natural peanut butter without salt and make a peanut butter and jelly sandwich. I also like peanut butter with frozen banana slices as a treat. If you like bananas, you can freeze them and then put them into a food processor and it tastes like banana ice cream.

RAI did not make me nauseated. I know that some people focus so much on drinking water in the first couple of days that they can make themselves sick from that and then there is the mental aspect. If you believe you are going to throw up, you probably will, so don't think you will. Remember also that you can drink other things besides water. It's extremely RARE to get sick from the dose because there is nothing in it that causes nausea. My last dose was 178 mCi's. I felt fine after taking it, no side effects at all except that I had a long drive home and I had to pee really badly. I didn't have the option to stay in the hospital.

I have had three surgeries (Total Thyroidectomy and two neck dissections) and I still feel like I have a lump in my throat most days, but it does get better with time. I have gotten used to the sensation and now it's a normal for me. You shouldn't expect to have any more swelling with the dose of RAI, shouldn't have any effect.

No reason to dread this, it's mostly the fear of the unknown. You will find that it's not as bad as you think it will be. Nothing is ever as good or as bad as you think it is going to be. Think of your isolation as some "me" time. Read a good book, catch up on daytime TV and pamper yourself. Take naps! There are times now when I almost wish I could do another treatment just to take the time off and be left alone for seven days. I work in the Medical field and there are some days that are so stressful I would rather have surgery or treatment again. Stupid but, it seems to be the only way to get time off when people leave me the heck alone.

Suck on lots of candies (I like Jolly Ranchers and Lifesavers) that make you salivate to keep your salivary glands producing and flushing. The only side effect is sometimes you have a loss of taste for a while after the dose and some experience a metallic taste for awhile. Certain foods taste a bit strange for a couple of weeks as well. I had a McDonalds breakfast burrito on the way to my scan seven days after my dose and the sausage almost burned my tongue. My Nuclear Medicine Doctor prescribed Steroids to take after my treatments so that my salivary glands and taste buds would not be affected. It worked for me both times because I haven't had any lasting issues. This isn't a common practice but you might ask about it. You will want to get the prescription a couple days before the treatment so that it's with you when you need it.

Keep us posted and feel free to ask questions. We are here for help and support.

Blessings,
Julie-SunnyAZ

Newly diagnosed

Just finished having my left thyroid removed and am set to see an endocrinologist in a few weeks for the next step. Even though this thread is old I've been reading the comments and its been quite helpful as its getting me prepared for the next step(s). 

lesley1 said:

Newly diagnosed papillary/rai treatment soon

Hi, I wanted to say first off it has been encouraging reading your post. Some are very discouraging and I try to avoid that. While reading the post on your link one thing keeps popping up.  the LID.  I specifically asked my dr. about this, he shook his head and said no, I don't need to do this....but everything i have read says I do. I had a total thyroidectomy.  no nodules removed. one tumor that was malignant that they knew about and one of my small 7mm ones that was hot on the scan showed malignant.  I will be having an RAI on the 30th. I haven't had any thyroid replacement meds whatsoever since surgery not was I on any before surgery. So I am thinking this is why he said no to the LID? that my body would be starving for it (30th will be my 30 days post op)  Also, he told me to not be around my 3 1/2 year old for 2 weeks ( will be getting 100 millicurries) and this FREAKEd me out considering he has only spent one night away from me and that was for the first time 3 months ago.  I went over and spoke to the nuclear med tech and she said no. That I needed to stay away from him from the friday of my treatment to that tues. night and then have no physical contact with him once i got home (i will be staying with my dad) and how i needed to use trash cans  with lids on them to dispose of all of my plates utensils whatsoever and clothes.  to store them their for 2 weeks before disposal.....I am on information over load right now so any insight from anyone would be greatly appreciated. Keep in mind, information overload!! So baby steps please, this is all very very new to me. Thanks again, Les

What are the standards?

Hi Lesley,

You're running into a problem we've talked about before here, "Is what I'm being told to do correct?"  There is no good answer, you need to to be as safe as you feel comfortable being.

As for the LID, a few other posters have said their doctor recommended against, but almost everyone has said their doctor recommended for.  When I went through this two and a half years ago, I found a study on the internet that said there was no direct evidence that the LID helped the RAI therapy do its thing.  However, the same study recommended a 1 to 2 week LID and suggested further study was needed.  I followed a 2 week LID that was not as strict as some I've seen here, but still it was pretty complete.  I talked to my endocrinologist about the LID and he didn't seem all that concerned about how well I was following it.  I'm sure he was aware of the study and I guess he figured since I was asking him about it I would probably follow it as much as possible.  (I still have the instructions if you're interested in what I did.)

As for your confinement (for lack of a better word), this in particular is a matter of how safe you feel following any particular guideline.  If you think there is little risk, then you don't have to stay away that long.  If you want to be extra careful then follow your doctors suggestion or stay away even longer.  I didn't have the problem that you are since there are no children home anymore, but I did talk to my endocrinologist specifically about this.  I-131 has a half life of something like 8.5 days (if I remember correctly), which means half of whatever quantity is in your body will break down every 8 days.  It's not that bad because your body excretes 98% to 99% of the iodine you ingest in 24 to 48 hours (almost all in your urine, a very small percentage in your sweat and other excretions).  One of the things your nuclear medicine people will do is a post RAI scan to measure the percent uptake of I-131.  For me this was 1.3%, so 98.7% was gone after 2 days when they did the post RAI scan.  One of the things I did was drink a lot of water for the first few days (I'm not sure about how long, it was 2.5 years ago) after they gave me the RAI.  I guess this helped flush the excess I-131 out as quickly as possible.  To sum up, the most important period is the first two days when almost all of the I-131 you take is excreted.

Again, it's all about your comfort level.

Alan

PS I've never asked, but I think the problem with the I-131 treatment is less about the radiations you emit than the fact that you're excreting I-131.  I-131 in very large doses kills thyroid cells, in very small doses it can cause thyroid cells to become cancerous.  You could ask the nuclear medicine people this question, I would think that they would know.