to quote my wonderful endocrinologist, " even the most accomplished surgeon can not possibly get all of the thyroid cancer cells." i do think that my endocrinologist is wonderful- i was not being sarcastic , but my surgeon( and his very large ego) was not so happy to hear that he may have missed some of the bad guys. so, after my cancer surgery, i had the option of having the radioactive I -131 treatment( to me it sounds like chemo- and that is what i usually call it) or not. it was a no-brainer for me. my tumors had " exploded " into my lymphatic system, to quote the radiologist, so there was no doubt in my mind that some of those nasty little thyroid cancer cells were lurking around in my body, ready to cause mayhem and possibly start some thyroid cancer tumors elsewhere in my body. yuck.
to give a little bit of an explanation why use the I-131, to date, thyroid cancer can not be treated with traditional chemotherapy. although i believe that a new drug has been approved by the FDA to treat a certain type of thyroid cancer.( i do not have all of the information about this drug, but i can research it and get back to anyone who might be interested.) . but the norm for treating thyroid cancer after surgery is still to use the I-131. thyroid cells, cancer or otherwise, love, love, love iodine. our TSH stimulates the thyroid cells to gobble up iodine. so, if our thyroid is gone we should not have any thyroid cells left to munch down on the iodine. after our thyroid surgery, the doctor will do a radioactive scan- using a small dose of radioactive iodine - that will show any thyroid cancer cells that have been left behind after the mother ship took off. to quote my radiologist again, my scan " lit up like a christmas tree." i decided that no matter what side effects that i might have, i would go ahead with the I-131 treatment.
to prepare for the treatment, i had to be on the low-iodine diet. we want those thyroid cancer cells to be very, very hungry when they do come across the radioactive iodine. my doctor recommended, and i agreed, that i get the thyrogen injections instead of being off of my medication for several weeks.i had to work, and i know that zombies are very popular now, but who wants a zombie to fill their prescription? the thyrogen injection, or being off of the thyroid hormone replacement drug, will cause a pretty large increase in TSH. TSH hormone encourages thyroid cells to eat (sort of like how your mother does ).
so i get my radioactive I- 131 dose after my two thyrogen injections ( one day apart). the technician that administered the dose looked like she was embarking from a mission to the moon. the innocent looking capsule was in a glass vial inside a lead lined box. she handed a heavily gloved hand out to me and i took the capsule and swallowed. my mouth was sort of dry, so it took a lot of water. i had an hour to get home- that was when i would officially be radioactive. the radiologist told me not to go outside for three days. i said, " if i do, will the birds fall out of the trees or something?".
90 minutes or so after my I-131 dose, i felt very nauseous. i did not toss my cookies, but i sure almost did. i drank some cola ( my mom's cure for everything) and took a nap. i felt sort of funny- but i am not sure if i was just anxious about the treatment. i did have quite a bit of hair loss- but this could have come from the removal of my thyroid and not just the I-131. the side effect that i am still dealing with, though it is not as severe as it was at first, is salivary stones . the I-131 gets into the paratid salivary glands and solidifies making " stones". it happened to get my attention for the first time when i was at work. my jaw/face swelled up and was hot to the touch. needless to say, it was painful. i have found that drinking lots of sour lemonade works just about better than anything. the sourness stimulates the salivary glands to get those stones moving. you can also use warm compresses, and taking ibuprofen may help with the pain/inflammation.
am i sorry i took the I-131? heck no. my hair grew back- mostly, though i still deal with a little more hair loss than the "average" person. the salivary stone issue has been bothersome, but if taking the I-131 has meant that i will be cancer free, as i have been for the past two and a half years, then it was worth it. everyone must make up his/her minds on this issue. RESEARCH, RESEARCH, RESEARCH!!! talk to your doctor and other health care providers, then make the best decision for you.
one thing though. i do NOT like to hear- and it is up there with " thyroid cancer is the best cancer to have" issue, that the I-131 is not without side effects. as i said, it is thyroid "chemo" to me. no, it is not as bad as traditional chemo as far as side effects go. but it is not without side effects, and i do not like to hear doctors or other health care providers trivialize this treatment. to those of you who may be undergoing this treatment now, i wish you the best of luck.
for my next blog, i will stay on the thyroid symptom train, but it will be a surprise. i,e., i have not decided on a topic yet! but it will be forthcoming this week.
Great article Bea. I have had a bout or two of the swollen paratid glands, but have been able to manage them with hot compresses and massage. Thank you for writing about this. This is something the endocrinologist doesn't tell us about those side effects. Take care.
ReplyDeleteyou are so right, karen. no one prepared me for this side effect of the I-131,and i was so scared that it was lymph node cancer. i was lucky enough to see an ENT and he told me what was happening and why. no one knows how long these symptoms may last- it has been two years since i got the I-131 and this weekend i had a flare up. i was traveling, and did not drink enough water. i knew what it was, and was not scared this time, and getting back on my " water drinking regiment" and adding the sour lemonade did the trick. thank you so much for your comment.and good luck to you as well!
ReplyDelete