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PapillaryThyroidCarcinomaTreatment

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

Hi,
I was diagnosed with Papillary Thyroid Carcinoma. I just became a member and I live in a town and don't know many people I am just looking for some support and anyone that has any clue as to what goes on with Radiation I have to undergo radiation Oct 27th. I had my thyroidectomy Sept 9th. Just wondering about the side effects o n radiation a nd such. Thanks.

sfl67
Posts: 55
Joined: Nov 2009

Hi,

Since you are new to this site, my suggestion would be www.thyca.org. It has been a valuable site in my search for knowledge of my cancer, Hurthle Cell, as well as what to expect with treatment and also an excellent, printable, free, low iodine cookbook. Your doctor might suggest this diet 2-3 weeks prior to your scheduled RAI.

I wish you well in your treatment.

nasher
Posts: 507
Joined: Apr 2010

welcome to the site... i also recomend thyca.org great site

the low iodine diet is not fun i will tell you that much

if you look through this site you will see lots of us listing our experiances.

we are happy to answer your questions so please ask.

thyca has a list of most the side effects and the LID (low iodine diet) as well as alot of other information. if you have any questions specificaly about how we felt again we will be happy to tell our experiances.

mpatrix
Posts: 8
Joined: Oct 2010

I went through it just last october. It wasn't that bad it was painless I took a couple pills and well this was the hardest part I was stuck in a room with no visitors allowed for 4days. And being the social person I am,I felt like that was the worst thing in the world. They wouldn't even let me keep my cell phone with me.
On my personal experience my taste buds made everything I ate taste funny. I did although look at the bright side of things while I was in there I had control of the tv remote.
I wish you the best of luck I looked at it as a vacation away but it wasn't to a resort that I would of rather had :)

lglegl70
Posts: 20
Joined: Oct 2010

I thought I'd post because I'm on day 4 of my RAI. I had a rather high dose of 150 mCi. It was just a couple of pills to swallow then shooed out of the hospital to go home into isolation. To be honest, it wasn't real easy at first. I was one of the rare cases that wound up actually throwing up after. It was probaby about 4 hours after, but it kept happening. My husband wound up having to call my dr and getting a prescription nausea medication, which worked wonderfully. I slept for two days straight. But, I'm feeling better now. Bounced back rather quickly. Sometimes I have a little nausea after eating, but nothing I can't handle. I have some swollen glands in my neck, and my incision area is a little swollen. Kind of how it was a couple weeks after TT. The isolation has been pretty hard. It gets pretty boring. I read a whole book in about 6 hours one day! lol

I don't mean to scare you with my post, just wanted to let you know it could happen. Maybe if someone would have warned me, I could have been prepared with anti-nausea medication just in case. It would have saved a lot of time! If it weren't for the vomiting, RAI would have been a breeze. I've had no taste bud effects or headaches or anything.

Best of luck to you! Be well!

amorriso
Posts: 186
Joined: Oct 2010

Hi. I just had my thyroidectomy a few days ago. since I live overseas its hard to get info - though the internet has helped a lot. I too will have the radiotherapy in a few weeks.

Keep in touch - here's to recovery!

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

Thanks everyone. It's nice to have people to talk to that know what I am going through. I have a great support system at home but it's not the same as to people that have been there before or that are going through. Does everyone go on the low iodine diet becaue I have my iodine treatment at the end of october and my doctor has not mentioned anything about this! Thank you for your help ! :)Riki

lglegl70
Posts: 20
Joined: Oct 2010

I understand exactly. Having people to talk to that have been through it is a differnt kind of support.

I don't know if everyone goes on the LID, but I believe it is recommended because they want your thyroid very "hungry" for iodine. LID deprives your thyroid of iodine, so when you receive the RAI, your thyroid will absorb much more of it...which makes it more effective.

I hope I made this easy to read and not confusing! ;)

sunnyaz
Posts: 582
Joined: Oct 2010

Yes, you have a much better chance of taking up the iodine if you deprive your Thyroid cells of it before the treatment. You want to get the most out of your treatment and this will be the key to taking up as much of the RAI as possible. Go to www.thyca.org for their cookbook of LID (Low Iodine Diet) recipes, download it and keep it handy. It doesn't need to be a terrible experience. You can basically have many of the same foods you already eat except for replacing the Iodized salt with Non-Iodized salt (found in any grocery store), avoid cheese and dairy products, and don't eat potato skins (the inside is okay) or any kind of Sea food/fish. I made everything from scratch during my scan dose and froze in containers for the treatment dose. I wasn't supposed to take up the RAI due to a B-RAF mutation gene, so I was especially serious about the LID. I DID uptake the iodine in the scan dose and was able to take the treatment dose. My prognosis is very good even after metastasis to the Lymph nodes. I wish you the best of luck!

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

Thank you all. This has lifted the stress/nervousness tremendously. My DR is not in my town and I feel like such a pain when I call to find out these things so its nice to be able to turn to this. Any suggestions for ways to pass time when I'm in "isolation" I have books and some movies and puzzles.

Thank you all again!

lynn2318
Posts: 41
Joined: Jan 2010

My first treatment was 6 weeks after my thyroidectomy. I thought I would feel fine after taking the RAI pill. I had 150mc and was ok until about 8 hours later. I was not nauseated but just felt bad. I had all these plans to clean my closet while stuck in my room, read books, watch movies and to be honest I did watch some TV but did not feel like doing anything. I was very tired and my salivary glands were swollen and sore. Be sure to have sour candy on hand because it does really help. About 1 week later my taste was off. Food that should be salty was a dull salty taste. I did have one weird thing happen. Water tasted like salt water from the ocean! The doctors could not explain that but it did eventually go away. Sorry this post is so long but I wish someone had told me what to expect. All in all the side effects are minimal compared to what it could be. Good luck and I pray for an easy, successful treatment.

sunnyaz
Posts: 582
Joined: Oct 2010

Just plan to take it easy and sleep. T.V. computer and books when you aren't sleeping. Think of it as a mini vacation. Pamper yourself some too. Keep in touch with everyone on line including the chat rooms, they can be very supportive. I responded to a post from someone who drank too much water during the treatment and it caused nausea. This might be a common problem with telling patients to drink plenty of water. The question is how much is enough? My Dr. in Nuclear medicine said to drink about eight ounces every two to three hours. They just don't want you to get dehydrated. I was also told that I could have other drinks as well. I even drank soda, which is one of my addictions. I used Jolly Ranchers and Lifesavers to keep my salivary glands producing and didn't have problems with swelling or soreness, but everyone responds differently to the treatment. By this Wednesday you should be on the LID. I recommend lots of fresh fruits and vegetables if you can. The muffin recipes from thyc.org were also very yummy. Best of luck and well wishes!
Sunny

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

Thank you so much! This site is wonderful for support! It's such a different support then the love and support at home! Which sometimes you need! Thank you for the help! I really appreciate it!!

Riki

HHMinton
Posts: 6
Joined: Oct 2010

Riki,

Thank you for your questions and everyone thanks for the answers. I am about to start the Iodine treatment as well. Just waiting for it to get sched. actually. Have been off my meds for about a month and am feeling terrible. I have had many questions about this treatment and few answers and have been getting really worried and kinda scared about what to expect. All of this has been helpful to me as someone who just barely joined.

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