Comments on: Thyroid Cancer- Low Iodine Diet & Waiting for Radioactive Iodine Treatment

By: Ta'Ree

Ta'Ree — Wed, 28 Sep 2011 23:06:54 +0000

Love the blog. I have been battling Stage IV Papillary and Follicular Cancer since 1999. I have had three surgeries, three I131 treatments, and multiple RAI scans every 6 months. I have always been lucky enough to receive the Thyrogen injections to avoid going off the med’s for 6 weeks. I still had to do the Low Iodine Diet.
Unfortunately, the hospital ran out of radiation and then the Thyrogen injections (with zero hope of getting the Thyrogen med’s for at least a year). My scan was put on hold. Three months later, my doctor found out and freaked out! I received a panicked phone call from the doctors office stating the hospital has the radiation and my RAI scan was set. I was immediately taken off my med’s for 6 weeks. I am at week 4 and I have every complication one can get plus more (hair falling out, fatigue, intensification of my tremors, joint pain, headaches, emotional, double kidney infections, stomach issues- due to lack of a gallbladder/throwing up and memory/concentration issues) and I am about to start the Low Iodine Diet for 14 days. I was told years ago that my system does not tolerate the loss of med’s, so the Thyrogen shots are the way to go for me. It helps alleviate the rapid system shut down I experience, due to being hyper sensitive. I have a new appreciation for all of you that have had to be off your med’s for 6 weeks prior to a treatment or scan.
All I can say is Thyrogen injections are the way to go. The Drug Companies need to step it up. Cancer patients have enough to deal with without making the process more difficult.
On a positive note, I may not have not made it to remission yet, but I live each day to the fullest. The cancer is inside me, but it does not define who I am. I will make it to remission one day and that day will be worth celebrating. Hang in there fellow survivors, survivors we are, take it one day at a time.

By: Mary

Mary — Tue, 20 Sep 2011 18:02:44 +0000

RAI seclusion. Trying to prepare for something I cannot see, taste, smell or feel is puzzling. I’m supposed to trust that in 72 hrs. the contamination is gone. Why wash down the sink after I wash my hands? What about stepping on the floor after the two showers per day? If nobody is in the house with me, am I free to sit where I like or will the radiation linger wherever I touch? If clorox simply spreads the radioactivity, then how does one clean up? Anybody have any specific answers? So far, all I have is to kick the family out for 5 days, use gloves, plasticware and hope for the best.

By: Thyroid Cancer- “You Are Cured” | A Mama's Blog

Thyroid Cancer- “You Are Cured” | A Mama's Blog — Wed, 30 Mar 2011 17:46:17 +0000

[...] recovery from surgery was a nightmare, because of some mistakes made by my then endocrinologist’s office. I went [...]

By: Laura

Laura — Wed, 05 Jan 2011 17:55:02 +0000

Victoria

hope this is not too late.

I got 175mcI dose on my RAI (Dec 17th, 2010)

In my case they found 2cm thryoid nodule whoich was pappilary follicular and out of 27 lymph nodes, seven had cancer. They said my dose was very high. I was worried because I have not read anybody with 175.

But two weeks after that, I am back to work now, have my period so please do not worry too much.

Good luck!!!

By: Victoria

Victoria — Tue, 28 Dec 2010 05:06:58 +0000

Thank you so much for your response! =)

Honestly, I’ve been wanting to hear from someone that had lymph nodes removed. Reason for my stage 3 is based on my age late 40′s. If I were in my 30′s than I would be stage 1B, something like that. Thanks for your support, I guess it isn’t that radical. Its just scary. It does vary. I was just wondering now, if anyone took calcium and calcitriol while on the diet. I stopped and hoping rai131 doesn’t affect my bones or get something later like lukemeia.