CancerCompass message board discussion started by PLS444 on 6/18/2008 http://www.cancercompass.com/message-board/message/all,25177,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello everyone-I had my TT April 29th and took my RAI this morning. They said it was 150, not sure if that is lots or normal, they said normal. I am staying at someone's house who is out of town. I took compazine this morning and again this afternoon and am about to take it again in a few minutes. So far, I have been really tired and that is it. When do the side effects start kicking in? I am nervous in anticipation and am not sure what or when.I am using surgical gloves to eat and stuff. I washed the clothes I wore today and am planning on washing all of the bedding when I wake up in the morning. What else is there? I feel like they tell you some stuff, but i feel like unless you have gone through it, you just don't know as much. I am turning to everyone here as you all have given so much great information to me and to everyone!Thank you- Paige PLS444 Wed, 18 Jun 2008 00:00:00 GMT I also had 150 RAI.  About 3 hours after RAI, I began getting sick and it lasted for a couple of days (constant nausea and vomiting).  I don't know why it hit me so hard because most people on the board have not had any problems at all.  I was told to shower 2-3 times a day (which I couldn't do because I was so ill).  I used a new toothbrush every day and a travel-size toothpaste so I could throw everything away.  The isolation was hard for me since I was so sick and alone in a strange apartment.   It sounds like you are doing well!!  Good for you!! YaYaTara Wed, 18 Jun 2008 00:00:00 GMT It kicked in for me within a few hours and I just felt very sick and lived off of zofran, and just slept as much as possible. I had to wipe down everything I touched. The nuclear medicine people told me to wipe down the toilet seat after I used it, then flush it twice. The same thing with sink. I was told to throw everything away like magazines and things i used to keep busy. I ate off paper and plastic. I also changed my bedding everyday because everyday more and more radiation comes out of the body.Good luck! Sleep a lot! I promise it will help. dontquit8941 Wed, 18 Jun 2008 00:00:00 GMT Keep us posted on how you're feeling. I felt worse the second night. I had horrible side-effects and while I am hoping you do not (many ppl do ok!!), I'd like to offer support if you need some. I found it so frightening to be alone during the whole thing, as well. Since I was by myself I flushed twice and used paper products but other than that I did a thorough cleaning after the fact. Hang in there and drink lots of fluids! jenneric2000 Thu, 19 Jun 2008 00:00:00 GMT I had sore salivary glands the next morning, but nothing else. Char02032 Thu, 19 Jun 2008 00:00:00 GMT Here's the other view... You may not have any real effects except for tired from hypo. I went through it on April 16. Never felt nauseaous or anything. Took walks and even fixed a sink. I read online here about another person who painted their porch. So you may be fine. My endo said that my 100 dose of RAI would cause me no discomfort. And it didn't. I also was careful (flush twice) wipe things down, etc. but to nowhere near the extent that some others have. I pretended that my sweat and fluids were "white paint" and that anyplace I left them I needed to remove them. I slept on top of an old comforter (sp?) so my bed was safe. Within about 24 hours most everything has left your body. FYI... in 40 days the 5 half-lives of the radiation have expired so no matter what you've "left behind" it's now safe. The real problem (probably the only problem) is literally someone ingesting your "white paint" in their mouth. Good Luck. RedStar RedStar17 Thu, 19 Jun 2008 00:00:00 GMT On 6/19/2008 RedStar17 wrote:Here's the other view... You may not have any real effects except for tired from hypo. I went through it on April 16. Never felt nauseaous or anything. Took walks and even fixed a sink. I read online here about another person who painted their porch. So you may be fine. My endo said that my 100 dose of RAI would cause me no discomfort. And it didn't. I also was careful (flush twice) wipe things down, etc. but to nowhere near the extent that some others have. I pretended that my sweat and fluids were "white paint" and that anyplace I left them I needed to remove them. I slept on top of an old comforter (sp?) so my bed was safe. Within about 24 hours most everything has left your body. FYI... in 40 days the 5 half-lives of the radiation have expired so no matter what you've "left behind" it's now safe. The real problem (probably the only problem) is literally someone ingesting your "white paint" in their mouth. Good Luck. RedStar A couple of corrections on my post. 48 hours is what it takes your body to expel most of the radiation that it will in liquid form (I mistakenly said 24). Also, I was not cavalier about the RAI, I stayed away from folks for a few days, kept a distance from from my kids for two weeks, ate with separate utensils for a week or so. Also, I did mine in April in New England (USA) so sweating wasn't an issue... hence... one shower a day was probably okay. Don't forget the lemons!!! I never did lemon-drops, only real lemons. Two good saliva-producing bites about every waking hour for two days. RedStar RedStar17 Thu, 19 Jun 2008 00:00:00 GMT Hi PaigeIt sounds like you're on the right track with precautions. As far as side effects, you may not have many or any! I sure hope so. My husband was not so lucky. He was severely nauseated which made for a hard time flushing out his system since he felt he couldn't hold down even water. He did though, with the help of the medication. I would guess if you haven't had any by the second day you can safely say you won't. (As far as getting nauseous, that is) I heard the salivary gland, tongue, taste bud problems can begin much later, but that doesn't mean it will happen to you!  If it helps, my husband didn't have any of those problems at all. It's been almost 2 months and he is still fine. Good luck to you. It sounds like it's going well.Karen Karen321 Thu, 19 Jun 2008 00:00:00 GMT RedstarWe're also in New England. I agree...sweating in April is not much of an issue! Karen Karen321 Thu, 19 Jun 2008 00:00:00 GMT Thank you everyone! I slept for 12 hours last night. My neck is pretty sore. Especially the scar area. I am groggy. I did not go hypo, I used Thyrogen, so I took my synthroid this morning. I am going to wash all of the bedding as soon as I wake up enough. I don't feel hungry at all, but I guess I will keep up the lemon candy. It sure helps to have others like all of you to chat with on here. I was told I could have visitors starting friday night as long as they aren't kids or anyone pregnant. I am waiting until Saturday just to be safe to have anyone come see me. Thank you again everyone! PLS444 Thu, 19 Jun 2008 00:00:00 GMT Hi, I'm new here.  I had my thyroid totally removed last Tuesday.  I had a 5cm papillary cancerous nodule.  The cancer did not spread from the thyroid, though, so that is great.  I'm going to be doing the RAI pretty soon and I'm nervous about it.  I'm afraid of making anyone sick.  I thought about maybe checking into a hotel or cabin or something away from everyone.  I haven't asked my doctor yet, but maybe someone here knows, what about affect on animals?  I actually do animal rescue, so we have several dogs, cats, birds, lizards and horses.  Are any of them at risk that anyone knows of?  What about using my computer, cell phone, that sort of thing, will that mean it is contaminated until the 40 days is over?  Also, I'm supposed to go on vacation with my family 3 weeks after my RAI dose.  Will it be dangerous then to be around my sister's small kids, they are 2 & 4.  I figure mine should be fine, my youngest is 12 and he's actually bigger than I am!  I'm not nervous about me being sick from it, I'll deal with that.  I'm just really worried about those around me.  What about my car after I drive home from the treatment?  Should no one use it for a while?  I don't want to hurt anyone.  -Lori lori41470 Thu, 19 Jun 2008 00:00:00 GMT Hi! I had RAI on June 2nd of this year. I didn't have any problems or side effects at all. I stayed in the hospital for 3 days. ( I have 2 children at home) I was mostly bored. They told me to try to make sure I didn't throw it up or I would have to repeat it. I am usually a person who does get ill so I am surprised I had no side effects initially.  Start sucking on small candies (lemon drops) 24 hours after your RAI was given this will help your salivalary glands. I didn't do this because mine didn't bother me, so I thought there was no need. Well, now its been three weeks and I have a sore throat and its because I have a delayed reaction they call it. My glands are now swollen. Other than that everthing else is fine. I know this is extremely boring. Just read a lot and watch TV. I just ate and did nothing. The treatment really isn't bad its not being able to do or go anywhere. I will keep you in my prayers. Good luck and I hope you feel better soon! Nicole    Nicole C. Thu, 19 Jun 2008 00:00:00 GMT Hi Lori-I just finished my Rai. I was diagnosed in late april with papillary thyroid cancer. I had a tumor that was 18.5mm it also thankfully hadn't spread beyond the thyroid. I had a thyroidectomy and I feel great. To answer some of your questions I will tell you what I know from my experience: The doctors do not want you to be around children under 18 years of age. The reason for it is that the radiation can effect their thyroid and their ability to grow. From what I understand.  You can drive yourself home from your treatment if you feel up to it. I felt fine. I did have my husband pick me up. We have a mini van, I sat all the way in the back. It was kinda funny.It is nice to be able to stay some where else if you can in your recovery, espescially if you do have young children. I was at home after 3 days in the hospital, however I stayed locked in my room by myself and did not see my kids at ALL for the entire time which was 8 days. My husband left meals outside my bedroom door on paper plates for me. It was difficult to do but It was nice to be in my own bed. My husband slept on the couch.I did not leave my room one time. I could not wait for my bone scan the following week so I could leave the house!!! I have never looked so forward to a doctor appointment in my life.  After you have your body scan they will clear you from radiation and let you know if you can be around others. Usually it is fine. The treatment itself is not bad. I didn't have any side effects. The diet can be difficult. You have to read all packages and pre-plan your meals. Other than that, Save up all of your books, magazines and get ready for lots of rest because thats all you will be doing.   Good luck!!Nicole    Nicole C. Thu, 19 Jun 2008 00:00:00 GMT Ok, so day 2 is almost over and while a bit of nausea kicked in this afternoon, all seems ok. What other side effects kick in on day 3? I broke down and had a piece of cheese. I couldn't take it anymore of the low iodine food I have here. I don't feel well enough to cook today and the cheese made my stomach feel so much better. Is this really bad? I have to go have blood taken tomorrow, on day 3 and then on Monday, day 6 I have the body scan. My doctor said I can stop the LID on day 4 which is Saturday. I am confused since it some people say to wait for the body scan and some say not to. My doctor said I can eat regular food on day 4. What is it? PLS444 Thu, 19 Jun 2008 00:00:00 GMT  On 6/19/2008 lori41470 wrote:Hi, I'm new here.  I had my thyroid totally removed last Tuesday.  I had a 5cm papillary cancerous nodule.  The cancer did not spread from the thyroid, though, so that is great.  I'm going to be doing the RAI pretty soon and I'm nervous about it.  I'm afraid of making anyone sick.  I thought about maybe checking into a hotel or cabin or something away from everyone.  I haven't asked my doctor yet, but maybe someone here knows, what about affect on animals?  I actually do animal rescue, so we have several dogs, cats, birds, lizards and horses.  Are any of them at risk that anyone knows of?  What about using my computer, cell phone, that sort of thing, will that mean it is contaminated until the 40 days is over?  Also, I'm supposed to go on vacation with my family 3 weeks after my RAI dose.  Will it be dangerous then to be around my sister's small kids, they are 2 & 4.  I figure mine should be fine, my youngest is 12 and he's actually bigger than I am!  I'm not nervous about me being sick from it, I'll deal with that.  I'm just really worried about those around me.  What about my car after I drive home from the treatment?  Should no one use it for a while?  I don't want to hurt anyone.  -LoriFirst of all, do not stay in any public hotels, cabins etc.  You risk  affecting the maids, room service people, others in the hotel etc.  Not a good idea!  Stay away from all of your animals.  They are living beings with thyroids too.  In fact, I have a dog who is on meds for hypothyroid.  Treat them just like you would your kids.  For computer and cell phone, either wrap them in saran wrap or use latex gloves for the first few days.  I even wrapped my remote.  One week after RAI you will be cleared to be aroound anyone you want.  No problem with a trip three weeks later.  I used a sheet on any furniture that I sat on just to be safe.  Other than that I followed everything you read about in this posting.  I won't bore you with a repeat.  But RAI was nothing for me.  I enjoyed the "ME" time, slept, watched tv, played on the computer and felt great.  I lost my taste buds one week later but they seem to be coming back now after 6 weeks. dinparadise Thu, 19 Jun 2008 00:00:00 GMT  I'm sorry, I was misleading about staying somewhere.  Where we live, we have some large forest areas where they rent out cabins and condos, but they don't even have linens and there is no service to them.  They are basically buildings in the woods sparsely furnished with running water.  I thought that actually might put me far from everyone.  I'm glad I asked about the animals, I wasn't sure.  Also, I guess everyone has realized we are pretty rural, what about my septic tank or well water?  Will there be any harm to our well water?  Sorry to drive you guys nuts, I'm just really afraid to harm anyone or anything.  I think I'm done! lori41470 Fri, 20 Jun 2008 00:00:00 GMT I was in isolation for two separate weeks, and I felt fine both weeks, no symptoms what so ever. My stay was in the hospital, and I had to measure my urine everytime, and bag my utinsels. No one came into my room except the Dr. all gowned for just a couple of minutes. I had a total thyroidectomy, and lymth nodes removed on the one side, also my parathyroid glands. That was 37 years ago, I have my synthroid med. ajusted once in awhile, and keep the dosage a tad above the norm, so it keeps everything at rest. Therefore chances of the cancer returning is nil..but keep checking yourself for lymths nodes.... carla2003 Mon, 30 Jun 2008 00:00:00 GMT