CSN Login
Members Online: 12

what is rai like

grateful1
Posts: 81
Joined: Jun 2010

I GOT THE HEAD OF NUCLEAR MED AT A GOOD HOSPITAL TO DO RAI ON MY TUMOR--AFTER BEING TURNED DOWN BY ANOTHER DOC. I GO TOMORROW FOR AN INJECTION AND THEN FIVE MORE INJECTIONS. IS THAT THYROGEN--DOES ANYONE KNOW

THEN I HAVE A DAY OFF AND TWO MORE DAYS OF INJECTIONS AND THEN RAI--COULD YOU TELL ME HOW CAREFUL YOU HAD TO BE GETTING NEAR PEOPLE. 4 P.M. ON THE LAST DAY I EAT A REGULAR MEAL. I AM GLAD BECAUSE I CAN'T HAVE MEAT. SO IT IS VEGGIES AND BAKED POTATOES-CANT WAIT FOR SOME PROTEIN-CHEESE

DID U TAKE SYNTHROID WHILE UNDERGOING THIS TREATMENT

THE DR HOPES IT CAN SHINK IT ALL--IT'S FOUR SOMETHING

THEN I GET A FULL BODY SCAN A FEW DAYS LATER. WAS THIS THE WAY IT WAS WITH YOU THANKS

ibeatcanser
Posts: 47
Joined: Aug 2009

Hi,
Mine was a bit different... I was not on any medication prior to my thyroidectomy. For this treatment, you have to be off your meds; they need you completely hypo. I didn't get any injections at all... were you placed on the low iodine diet or just given the thyrogen shots?

About one month after my total thyroidectomy, I was placed on the low iodine diet for four weeks. I was then given a low dose of I-123, then the next day, the initial body scan. A week and a half later, I was given a high dosage of I-131. I opted to stay in the hospital for the first three days. I was in complete isolation at home for 7 days after that. I chose not to have any contact with family members during this time. One week after the RAI, I had my body scan. The first 3 days are most crucial to stay away from other people, especially young children and it's recommended not to go out in public for the first 7 days. I'm sure the nuclear medicine dept will give you all of the instructions (I know it's confusing, I was lost for a while) and make you sign a million forms.

For your RAI, you have to be alone for the first 7 days. You can't share your bathroom or bedroom. After you shower, the area must be cleaned thoroughly. You cannot prepare your own food. Someone else has to do that for you. All of your meals also have to be served on disposable tableware. Whatever food you don't eat, has to be flushed. I was instructed to shower and wash my hair three times a day. In my case, I chose to use a sleeping bag, tossed all of the clothing I wore and placed the "painters plastic" or drop cloth I think it's called on the floor. Mind you, you will be dead tired during this. I slept a lot to rebuild my energy. In addition, when I was awake, I did a lot of crossword puzzles to keep my mind active. Your taste buds will change, everyone's reaction is different.

I hope this helps...

Good luck!!!

PS, make sure that you have and eat a lot of sour candy right after the I-131 pill, this helps your salivary glands and drink a alot of water. You'll be tired, but the faster you get it out of your system, the better. Eat slowly, from my experience my throat/back of tongue was numb (I didn't realize that was the reason I thought that I didn't eat enough). I knew I was eating, but I couldn't feel the 'swallowing sensation.' Sometimes you can choke too, I did.

I forgot to mention that the actual RAI treatment is simply swallowing a pill. They come with it in a little "space nuclear canister" the doctor gives you a pair of gloves. He has his gloves on, opens the canister, puts it in a cup and tell you not to touch it. Drink it with water and eat sour candy like crazy. Then drink more water to pass it through your system.

ibeatcanser
Posts: 47
Joined: Aug 2009

How are you feeling? I know that I was scared out of my mind prior to the RAI. I honestly didn't want to do it either. But with the support of my parents and friends, I did it. It's been 10 months since my RAI and one year since my TT, thank God, I'm doing well.

It's not as bad as you think, I was deathly afraid of contaminating the people I love. After the three days in hospital, I locked myself in the room. I saw my mom when she brought me food. I used gloves when touching doorknobs. ( I must admit that I did go more extreme than usual, but for me I prefered to be safe). I wore socks when I needed to walk to the bathroom. My parents put the drop cloth on the floor. After my showers (it will knock the life out of you), I cleaned the area with scorching hot water. (I used bleach the first day home and the smell was more than I could handle). I forgot to mention that when you use the toilet, you MUST flush at least twice.

I also thought of staying in a hotel, but I was told that was a huge no-no. Not only would I expose the general public, the hotels are not as clean and it could have compromised my immune system.

Good luck and I will pray for you. Stay strong!!

Mickeyshell95
Posts: 3
Joined: Jul 2010

Hi. I was reading your post. My daughter is 13 and has been diagnosed with papillary carcinoma. She had her thyroidectomy 4 weeks ago and we r getting close to starting her RAI treatment. i am really nerveous about it because I have two young children in our home. I suggested to my husband that he takes the kids and goes to stay at his moms until it is safe to come home. Did you get sick when you had yours? I am concerned for myself since I am going to be the one taking care of her. I am also worried about the things in our home that could be contaminated. Due to remodeling, we only have one bathroom in our home. I am worried about not getting everything clean enough. Seems like you have to be so careful. Any suggestions?

nasher
Posts: 507
Joined: Apr 2010

I did not get sick when i had my RAI but it dose happen to some (i hear you only throw up once or twice if it happens)

as far as other types of sick not really you just get tired and such.

yes takeing the other kids away for a a few days is probably a good idea (pets too)

from thyca.org
-----
AFTER RECEIVING RADIOIACTIVE IODINE

Your Home Stay or Hospital/Home Stay

After receiving RAI for a scan, you will go home immediately. After your RAI treatment dose, you may be sent home immediately, or you may stay in the hospital for one or more days. The size of the treatment dose that involves a hospital stay varies from one jurisdiction to another, and sometimes from one hospital to another in the same jurisdiction. Currently, patients go home immediately after larger doses of RAI than in the past. Your home circumstances, such as whether there is an infant at home, may affect the decision about going home or staying in the hospital for a day or more after your treatment dose.

Below are samples of guidelines from informational materials. Please note that your physician and hospital may have different procedures and guidelines. Discuss your questions and concerns with your doctor.

Information If You Go Home Immediately After Receiving RAI

As your doctor will have explained to you, you will be receiving radioactive iodine as your treatment. Radioactive iodine decreases the function of thyroid cells and inhibits their ability to grow. It is given to you in liquid or pill form and goes directly to the thyroid gland where it is absorbed by the thyroid tissue. Most of the radioactive iodine will be received by your thyroid gland. Any radioactive iodine not collected by the thyroid gland will be eliminated during the first few days through urine, feces, saliva and sweat. The following steps listed below will help assure that the excreted radiation from your body does not contaminate the environment or cause harm to other people.

For information about possible side effects of radioactive iodine, see the information below in the section about the hospital stay.

What do I do at home?
If you go home immediately after a treatment dose, use the following guidelines regarding distance, time, and hygiene.

Minimize contact (less than 3 feet or 0.6 meter for more than 1 hour each day) with everyone for the first five days, and with small children or pregnant women for eight days.
Do not sit next to someone in an automobile for more than one hour.
Sleep in a separate room and use separate bath linen and launder these and underclothing separately for one week.
Wash your hands with soap and plenty of water every time you use the toilet.
Rinse the sink and tub thoroughly after using them.
Use separate eating utensils or disposable eating utensils. Wash eating utensils separately for one week. Do not prepare food for others.
Flush toilet 2-3 times after use for two weeks after discharge.
Males should sit when urinating to avoid splashing for one week.
Discuss with your doctor how long you should wait before starting a pregnancy after your treatment (usually at least two months for males and six months for females).
If you are breastfeeding, it should be discontinued, but can be resumed for subsequent childbirths.
-------

As far as clean enough
---the thing you have to worry about is time more than anything else... radiation has a half life
I-131 t1/2= 8 days

if an area gets contiminated and you miss it 8 days later 1/2 of the contamination will remain another 8 days later it will be down to 1/4 and so on... by the time your daughter is safe to be around people and such (by your doctors guidelines) make sure you keep washing the sheets and clothing seperatly for at least 14 days ... if you miss a spot it will probably be small and not much contaimanation... mabey a solution is makeing sure any area that may not have been completly decontaminated that people spend as little time in as posible for a few weeks. yes you have to be carefull but not paranoid about it.

as for yourself keep with what the doctors recomend. so for the first 5 or so days make sure you stay at arms length (about 3 foot or more) as much as posible and when you need to go closer make sure you minimize your time (quick hugs are ok to reassure her and such).

myself I got hospitalized for the first 2 days (high enough of a dose) so by the time i was home it was only 3 days at 3 ft or more.

bugest sugestion i have though (i am sure you read it elsewere) have lots of sour candies and such that your daughter likes/loves.. these will help flush the salavary glands and get the excess radiation away from areas it dosnt need to be.. i recomend a few difrent types of sour candy cause i got tired of them quickly.

as far as dishes and such use paper/disposibles for the first few days.

also remember your daughter will probably be BOORED so have things to entertain her that she likes and can do alone or with you at a distance.

good luck just keep reminding her that she is a survivor and she will beat this

ibeatcanser
Posts: 47
Joined: Aug 2009

how is your daughter coping? I would suggest that you mentally prepare her more than anything else for this. It was hard on me being alone, she will get scared, please assure her that it is for the better and ridding her body of the cancer. Ensure that she eats the sour candy and drink lots of water.

For me, I got a bit nauseated and threw up once (when I got home). This makes you more tired than anything else. It was a chore to go to the bathroom and shower too. You can ask the doctors to give her anti-nausea medicine. Will she be staying in the hospital for the first few days? It would be good for your husband to stay away with the kids. Actually, since she's quite young, you can call the Ronald McDonald House to see if both of you can stay there. Or you can also call your local American Cancer Society center for places to stay/support.

What we did was cover the floors with plastic, also doorknobs and any surface I touched. I chose to sleep in a sleeping bag and toss my old clothing. If you want to keep her clothing and bed linens, store them in a bag and wait for 7-14 days before washing (separately). For your bathroom situation, I think you'll have to talk to the nuclear med doc/technician for further suggestions. I know she'll have to flush at least 2 times.

My mom brought my food/water etc and talked to me from the other end of the door. If your daughter has electronic games, cover them in plastic. I hope she likes puzzles etc to keep her mind occupied, plus sleep is important to rebuild energy.

Take note that sometimes she might have "brain fog" or forget things easily (that was my experience).

Like Nasher said, don't be paranoid, be prepared. After her isolation, open all of the windows to let in fresh air. If your room has carpet, I would recommend that you steam it out. When the other children come home, limit their contact for an additional 14 days.

Take care...

Mickeyshell95
Posts: 3
Joined: Jul 2010

Thanks so much guys!! I feel so lost in all of this!! I wish I could go thru this for her. She is handling it so good, but I know this treatment is going to be hard for her. She is going to be hospitalized at first. Her doc said prob about 3 days. She enjoys reading so i will go buy her some teen magazines and such to try to give her something to do. I am thinking that she will prob sleep alot of the time. She saw her doctor this morning and they are trying to get things set up in houston at md anderson or the childrens hospital. We live in another state so I'm not sure how the insurance will work. They are checking on that for me. We unfortuneately don't have alot of confidence in our local doctors. They have a pretty good track record of missing alot of stuff. If you get cancer or have anything seriously wrong with you, it's best to get out of town! I am so glad that I found this website! It's nice to talk to someone who has been thru this and can give me some pointers such as sour candy! lol She will LOVE that!! Can't be too sour for her! Give her sour candy and chocolate, and she is in heaven!!

luvmygirls
Posts: 6
Joined: Feb 2011

How is your daughter now? I saw that your post was from July 2010. My 16 yr old daughter was also diagnosed with papillary carcinoma in June of 2010, and had her dose of I-131 in July. From experience with my husband, I knew what to expect. He has the same cancer and had 3 different doses of I-131 over the last 13 yrs. Now just 3 wks ago, my 13 year old daughter was also diagnosed. She will have total thyroidectomy in June 2011. Is there a family history with your daughter? Obviuosly in mine there is, but it is very rare for children to get this type of cancer. Also, did you notice any hair lose with your daughter? Both of my girls had thick long hair, especially my 16 yr old, that is what prompted me to have her thyroid checked. After 14 mths of ultrasounds and biopsies it was an uphill battle with distant spread to lymph nodes, The doctors kept telling me she had a colloid cyst, and they are always benign. Finally I found a doctor to take us serious especially with her dads history. Now we are repeating the pattern with my 13 year old. Have you had your other children checked? Hope they are all well!

luvmygirls
Posts: 6
Joined: Feb 2011

How is your daughter now? I saw that your post was from July 2010. My 16 yr old daughter was also diagnosed with papillary carcinoma in June of 2010, and had her dose of I-131 in July. From experience with my husband, I knew what to expect. He has the same cancer and had 3 different doses of I-131 over the last 13 yrs. Now just 3 wks ago, my 13 year old daughter was also diagnosed. She will have total thyroidectomy in June 2011. Is there a family history with your daughter? Obviuosly in mine there is, but it is very rare for children to get this type of cancer. Also, did you notice any hair lose with your daughter? Both of my girls had thick long hair, especially my 16 yr old, that is what prompted me to have her thyroid checked. After 14 mths of ultrasounds and biopsies it was an uphill battle with distant spread to lymph nodes, The doctors kept telling me she had a colloid cyst, and they are always benign. Finally I found a doctor to take us serious especially with her dads history. Now we are repeating the pattern with my 13 year old. Have you had your other children checked? Hope they are all well!

luvmygirls
Posts: 6
Joined: Feb 2011

How is your daughter now? I saw that your post was from July 2010. My 16 yr old daughter was also diagnosed with papillary carcinoma in June of 2010, and had her dose of I-131 in July. From experience with my husband, I knew what to expect. He has the same cancer and had 3 different doses of I-131 over the last 13 yrs. Now just 3 wks ago, my 13 year old daughter was also diagnosed. She will have total thyroidectomy in June 2011. Is there a family history with your daughter? Obviuosly in mine there is, but it is very rare for children to get this type of cancer. Also, did you notice any hair lose with your daughter? Both of my girls had thick long hair, especially my 16 yr old, that is what prompted me to have her thyroid checked. After 14 mths of ultrasounds and biopsies it was an uphill battle with distant spread to lymph nodes, The doctors kept telling me she had a colloid cyst, and they are always benign. Finally I found a doctor to take us serious especially with her dads history. Now we are repeating the pattern with my 13 year old. Have you had your other children checked? Hope they are all well!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network