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radiation fears

muddymtn
Posts: 1
Joined: Nov 2003

I HAD A TOTAL THROIDECTOMY ON 12/29/03.THE CANCER
IS PAPILLARY AND HAD SPREAD TO LYMPH GLAND ON RIGHT SIDE.I AM GOING BACK IN FOR IL131 THIS MONTH
IT WILL BE A STRONG DOSE.I DON'T KNOW WHAT TO EXPECT,I ONLY KNOW THAT I WILL BE ISOLATED FOR 3 DAY'S.ANY INFO. WILL HELP. THANKS,RORY

dickshep
Posts: 2
Joined: Jan 2004

I've had I131 twice, and it was more inconvenient than it was traumatic. Find a good book and if you hide a glow stick under your johnny, you can probably give the poor radiation techs palpitations when you start to glow. Good luck.
- Shep

cherrie
Posts: 38
Joined: Oct 2003

Rory, I don't think you have nothing to fear. I was diagnosed with papillary carcinoma when I was 18 and I was 4months pregnant so I had to wait for the treatment. after my baby was born I was taken of of my synthroid for 6 weeks and then they gave me a small amount of iodine and did the bodyscan which came back positive but it did not spread. this was in 1989, so the dr said that I needed the treatment and I was hospitalized and given 100 of the treatment and was there until the radiation went down. I was there for 3 days could not recieve visits and couldn't come out of the room. In 1994 I recieved a second treatment of 125 a bit more stronger then the first and was in the hospital for 4 days. Lasy year I recieved 152 and was sent home to be isolated at home for 5 days. and since my treatments are liquid it made me so sick the last time and I do not recomend it because I have kids and to use the bathroom I had to clean everything with Clorox and that made me feel worst cause of the smell I told my dr if I need another treatment I will not go home I rather stay in a hospital. I am now 34 and I don't think you have nothing to worry. Good luck and let me know how it goes

mandolinv
Posts: 8
Joined: Feb 2004

I don't know if you have already gone in for your treatment, but you really don't need to worry. I also had papillary thyroid cancer, I had my thyroid and 25 lymph removed in October. I did the low iodine diet and went in for my iodine radiation treatment. I too was nervous. I went in that day not knowing what to expect. You usually get a normal hospital room with no roommates. They tape off a line that your visitors cannot cross (limited time of 15 minutes). The nurse came in with a giant lead box and took out a small pill - that was my treatment. I took the pill, ordered in some Panera soup and sandwich right away - it was allowed (to satisfy the cravings leftover from the low iodine diet). I sat and watched TV and read, a radiologist came and measured my radiation levels occassionally and when they were low enough to go home, i was released. It only took about 24+ hours. Not bad at all. Then you go in to do your scan, and that was not scary at all either. If you have any other fears, please email me. -mandolin

Jennifer68
Posts: 12
Joined: Jul 2003

Hi Rory,
I had a high I131 radiation treatment also. I had a lot of cancer in the Thyroid as well as the lymph nodes. I didn't receive a pill my radiation was in liquid form. Unfortunaly I did get sick. I think it was a combination of being starved of the thyroid hormone (synthroid) as well as the high level of radiation. I too did the low iodine diet, If you need recipes I would be happy to email you the address you can down load a low iodine cookbook, my email: marasco@netzero.net . The hardest part was the headaches, nausea and feeling as if my mind was going crazy. Because of the higher dose my tastebuds were burned and my salivary glands were very swollen. Sucking on sour candy or chewing gum really helped with this. All of this is normal according to the doctor. The good news is that as soon as they started up the Synthroid I began to feel better within a week or so. Within three weeks I felt 50% better. I had the treatment at the end of October and by Thanksgiving I was feeling real good. Make sure you get alot of support, you are going to feel real tired. I am sure you will do fine,I will be keeping you in my prayers.

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