Anyone have multiple rounds of radioactive iodine (RAI)?

Posted by emdf96 @emdf96, Nov 14, 2023

I had a left neck dissection 3/2023, then thyroidectomy and partial central dissection 4/2023. 11/40 positive lymph nodes w/ positive margins so I had 150mci 5/2023. Full body scan showed thyroid bed uptake and bilateral lymph node uptake, so I had another 150mci 11/2023. The most recent scan showed lymph nodes have resolved but increased activity in thyroid bed still. They want me to do another 100mci in 6mos and I’m nervous about a 3rd treatment. Anyone else treated multiple times with RAI or have a similar story?

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Colleen Young, Connect Director | @colleenyoung | Nov 19, 2023

Hi @emdf96, I'm tagging a few members like @jolanda @cocha @lilyann @kevinmk @skipeak who have had radioative iodine for thyroid cancer. I believe some of them may have had multiple rounds of radioactive iodine.

How did the first 2 rounds of RAI go for you, emdf96?

kevinmk | @kevinmk | Nov 19, 2023

only one round for my wife for a tall cell version of thyroid cancer. all is well 10 months after. for a while there was loss of taste, dry mouth from saliva glands being affected. taste is back. seldom feel dry mouth. infrequent low grade pain around saliva glands but getting way less frequent.

jolanda | @jolanda | Nov 19, 2023

Good day
I had only one round of RAI.

hello2 | @hello2 | Nov 20, 2023

I only had one round. I suppose to have another test after a year of Iodine radiation treatment. I cancelled because of unresolved heath problems. Last week just found out the I have Lupus. I'm a little nervous about having that test done now.

Any thoughts from anybody???

Lynne Marie | @lbrockme | Nov 20, 2023

I have had 3 rounds to treat my Huertyle cell thyroid cancer. It was initally diagnosed in 1991, had partial then total thyroid removal surgeries. With partial removal of parathyroid that were affected. Then a followup RAI high dose 90 days later once i recovered from surgeries, with subsequent doses the next year on recurrences.
I was told 3% chance of surviving 3 years due to the rapid recurrence, aggressive
spread etc. That was 35 yrs ago ... we maintain control / suppression with thyroid medication at a suppressant dose.
Hardest part was the extreme fatigue with young children in the home . The high doses affected my ability to make red blood cells essentially, but once thst improved it was mostly adjusting to the medications and the affects on my parathyroid.
Praying for you!