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Anyone else have children and have gone through RAI? Really worried about exposure to my children even after the first few days.

lmcgra
Posts: 4
Joined: May 2010

I had a total thyroidectomy on Aug. 16th, 2010. I finally got an appt. with the ENDO in our small town area on Nov. 16th. Have gone off the synthroid and am presently on the LID diet. December 30th, I am to have my RAI and a week later have my whole body scan.
I have 4 babies and a wonderful husband that are going to stay with in-laws for a week. Can anyone tell me how they cleaned up their bath/kitchen/home so no one else was exposed to any radiation? I just want to be sure that my children are safe when they come back home. If anyone has any suggestions on how to get through these next 3 weeks, I would sure appreciate it greatly.
Wondered if anyone could use their cell phones or computer while they were in isolation? I was diagnosed with a 4 cm papillary thyroid cancer and had no symptoms other than being really tired which I attributed to working full time customer service and chasing 4 kids around the house.
I will be more than happy to talk to anyone and take any suggestions/advice. Thank you in advance! God Bless You ALL!

veronica57
Posts: 98
Joined: May 2010

I have a daughter, 27 and two small grandchildren, 9 and 6. The doctor told me not to be around them for 48 hrs. My daughter is very spoiled and hard headed:) She refused to not see me for two days. So she came anyway. The kids would hang around with their father while my daughter was at my house. But of course, I still worried about her being here with me. So I used gloves, and face masks that I have here. I cleaned everything I touched with lysol and the doctor also said, if she had to be around me, stay in seperate rooms. She would be in my room on my computer and I would stay in the living room.

I was not told to not use my computer or cell phone. But of course, I cleaned the keys after using it.

Be very cautious with the little ones. I would clean everything before they come back.
Good luck to you and God bless.

Veronica

lmcgra
Posts: 4
Joined: May 2010

Thank you for taking the time to write me back and give some good advice! God Bless You ALL!

Bob20000
Posts: 3
Joined: Dec 2010

Hi;
Icmgra;
Best wishes to you and your family.
I've read it's not that good an idea to bring a cell or computer into iso as you may contaminate them and if their radioactive levels are then too high, the hospital will have to keep them until their levels drop to acceptable levels.
If I do go ahead with my treatment, I'll be wearing gloves while using my computer for a week or two, but I won't be bringing it to the hospital.

sunnyaz
Posts: 582
Joined: Oct 2010

I had RAI in September and was in isolation for four days. My family stayed home with me. I have a husband, a thirteen year old, a dog, a cat and a parrot. I stayed in my room for most of those four days but used gloves when I had to come out for something. I would change gloves each and every time I came out. Be sure to buy a couple of large boxes. I kept a ten foot radius from any living thing in the house if I did have to come out of the room. I used my cell phone and computer with gloves on and then wiped them down very well after isolation. I used toss away Lysol wipes and kept everything in one bag that was tossed in the outdoor garbage afterward. I placed a plastic Ziploc bag over the TV remote control and then took it off and threw it away after isolation. Although I still wiped it down again afterward. The half life of RAI is about four days as well. So anything you touched will be non-contaminated after about four days anyway. Change your toothbrush out right after your isolation and wipe everything twice. Wash your bedsheets in hot water and rinse twice. I flushed my toilet at least two to three times every time I used it and then cleaned well after isolation. Nobody else used my bathroom during that time. I was able to watch a movie with my family from a distance of ten feet away with gloves and a mask. If your children are very young and won't understand that they have to stay away from you it it probably best to have them stay somewhere else.
Julie SunnyAZ

lmcgra
Posts: 4
Joined: May 2010

Thank you Julie! My kids are 15,14.12, and 7 yra. old. My friend says that my kids and husband can stay at her home which I am grateful for. You gave me so much information and am so grateful to you for taking the time to write me a lengthy letter about how you got through this!I am going out to buy some Lysol wipes and gloves! All we have is cell phones so I'm sure I can use gloves and use the speaker phone to keep in touch with my children! Again, thank you so much and if you have any suggestions if you experienced any side effects. I unfortunately am not good with pain or nausea, so I am hoping that I am one of the lucky ones to not experience salivary problems or nausea.
Please email me anytime @ dlmcgra@centurylink.net. Thank u so much everyone!

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Imcgra,

You are very welcome. I am happy to help with any questions you have. So, it sounds like your kids are old enough to understand what is happening.

I didn't have pain or nausea during my treatment. After isolation I felt a bit "zapped" of energy however. I used paper plates and plastic utensils and threw everything into my throw away bag along with the used gloves Lysol wipes etc. One thing that I heard from other people about the nausea is that they were told to drink A LOT of water. This is really an exaggeration. You only need about eight ounces every two to three hours or so. It doesn't even need to be water. I drank diet soda, juice, coffee, tea and water. Anyone who drinks too much water will make themselves nauseated and it can cause vomiting. I pre-made lots of foods and froze them in containers so that it was easy to heat and eat and get back to my isolation room. I stayed on the LID diet for the first three days of isolation. I still try to eat a Low Iodine diet because I have had recurrence. I avoid sugar whenever possible even though it's difficult especially this time of the year. Sugar feeds cancer and Iodine feeds Thyroid tissues. Don't feel alone in this, I am getting ready to do it all again in about four to six weeks as soon as I have recovered from the surgery I had on Friday.

Farzana25's picture
Farzana25
Posts: 24
Joined: Dec 2010

hey there

i am curious to know one thing. i was diagnosed with papillary. it was a 4cm tumer.it was only confined in my lobe no spread in my lymps. my whole thyroid was removed on 19th Nov. and on 21st dec i had my RAI and my body scan came out clean on 23rd.doc has released me.and asked me to come back 6 months later for follow up scanning. and has given me Eltoxin 100 mcg.

i was just wondering how did u find out ur cancer has come back again? i was very happy with the result of mine. but after reading ur condition its making me nervous.

can you tell me ur reoccurance symptom?

regards
farzana

sunnyaz
Posts: 582
Joined: Oct 2010

I did not have RAI after my total Thyroidectomy and had metastasis six months later to the Lymph nodes. My Endocrinologist said that because I was stage 1 and had no other metastasis that I did not need RAI after my TT. At my six month check up Ultrasound he found a Lymph Node that was found to be cancerous after a Fine Needle Biopsy. I then had a neck dissection on the right side and had RAI after that second surgery. The third time, I just wasn't not feeling right. I was tired all the time, so I scheduled an appointment with my Endo to see what he suggested. Maybe change my med dosage? He did an Ultrasound and found that the original node discovered back in May was STILL there and spreading. The ENT surgeon had missed it. So, I recently (Dec 17th) had my third surgery (obviously with a new surgeon) to remove the node along with other suspicious nodes and I will have to do RAI again next month to kill any remaining microscopic cells that might have floated to my blood, lungs or bones.

Sounds like you might have had RAI after your Thyroidectomy, so I wouldn't worry too much about recurrence. Also, I tested positive for the B-RAF mutation gene which makes my cancer more aggressive and more difficult to treat.

Hope this answers your questions.

Julie-SunnyAZ

Denniej27
Posts: 2
Joined: Dec 2010

Imcgra, I wrapped phones, remotes, etc with suran wrap and had a box of those disposeble latex gloves to cook with or use pans for cooking. Since I couldn't keep my 2 1/2 year old away from me, I had to stay downstairs (refinished basement) while she was upstairs after daycare. It was tough hearing her and not being able to be around her. For the first 4 days, she and my partner stayed at friends house. By the time they came home I was able to be around them but still didn't let the small one drink after me for a few weeks.

Farzana25's picture
Farzana25
Posts: 24
Joined: Dec 2010

Hi,
i am 29. female.and had my total thyroidectomy on 19th Nov and had my RAI Dec 21st.since i came to Bankok alone for my treatment i didnt have any problem in hospital. coz i didnt have visitor. i drank a lot of water so the radiation level dropped to below 5 by 23rd Dec. i was released.what u can do wrap up things like remote.. handles of freeze or drawers, commode rim with plastic wrap.and take them off before ur family members came. dont use ur washing machine for washing cloths.use hot water and bucket. within a week and a half the radiation should be gone.take shower 2/3 times a day which helps to get rid of the radiation which come out through perspiration.keep flushing ur toilet atleast 2 times after use and wash ur hand thoroughly.

use only one set of plate and glass for urself...or disposible glass plates for a week. hope this helps.

Farzana

JustAnnie
Posts: 12
Joined: Dec 2010

I am getting the I 131 in the near future as soon as I can get it scheduled and I really appreciate reading how you minimized the radiation at home. How come you should not use your washing machine? Do you recommend bagging your dirty laundry and wait a week to wash them? I also have concerns about the bedding and mattress. Should you cover the mattress in plastic? Disposable pillows? I am going to "hole up" in a spare bedroom and it will be tough not to be off the computer for a week. I was thinking of just using an old keyboard and mouse that can be tossed afterwards. Also, does the Lysol wipes really remove the radiation? Any suggestions for prepping before I get the treatment would be a Godsend! Still am trying to come to grips with "I have Cancer" concept. One more question, I know the size of dose also must factor in but how soon is it safe to return to work? I sit near a coworker at a desk. I am at the desk for 8 hours and after I leave another uses my desk and computer.

sunnyaz
Posts: 582
Joined: Oct 2010

You won't need to wait to wash your clothes. Many people go way overboard when they write about this stuff on line. You can wash right away and there won't be any residual in the washing machine. I did not cover my mattress and I just washed my sheets and mattress cover once with a double rinse cycle. My husband stayed in the same bed with me after my four days of isolation. I did not use disposable pillows. Just washed the cases. But my husband never uses my pillows.

You can use gloves on your computer if you have concerns and then wipe it down after isolation. I just wiped down my computer after isolation because I have a laptop. Lysol wipes are good because you use them once and throw them away. Any good cleaner and paper towels will work. I used Lysol for the simplicity of it. I went to work after day six. I was isolated for four days, but I had a long weekend before I had to return. I did feel fairly weak on day five and six however. If you can take a few extra days I would advise it. Depending on your dose and what the Radiologist recommends, is a good guideline. I had 83 mCi's. They will always give you one more day than you should really be isolated just to be sure. So in reality, I was safe after three days but they told me four just to be absolutely sure. I hope this helps.

Julie-SunnyAZ

CherylMike
Posts: 118
Joined: Oct 2009

Hi Annie~ I underwent my RAI a month ago. I was told it was fine to wash my clothes in our washing machine, just to bag and wash my clothes separate from everyone else. I was also told it was not necessary to cover the matress in plastic unless you have night sweats. (I do and will wake up with wet sheets). Because of this, I opted to buy an $11.00 blow up mattress and slept on it. The doctor told me it would be ok to cover the matress, but for my peace of mind, I opted on the blow up matress. I had asked my doctor if I should "bleach" the shower after bathing (I had read this online somewhere). He said no, that this was radiation, not a "bacteria" type thing that bleach would kill. I also purchased a couple of paperback books, snacks (I was kept on the low iodine diet for 3 days after RAI), disposable plates and silverware, (2) cases of water, disposable gloves, an alarm clock, sour candies and lemons. I also had made up a low iodine pasta dish that my daughter would heat up for me. I would ask your doctor on your question regarding returning to work. I was told to stay away from everyone for (4) days, except for my 17 month old grandson and my 5 month old puppy. I had to be away from them for (2) weeks. Hope this helps. I know there is alot of conflicting information out there. I would ask your doctor if he has any literature on the "do's and don'ts" on your RAI procedure. My doctor gave me a handout which spelled out alot of answers to the questions that I had. (My dose was 100).

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