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dink2813
November 16th, 2007, 11:07 PM
Hi...this is my first post!! Let's say me and the thyroid just don't get along....I've had thyroid cancer 3 times now...yes, 3. It has metastasized to my lymph nodes and now they are telling me I have it elsewhere...number 4. I am schedule for my third round of RI-131 but now they are telling that I am getting RI-123..what the heck is the difference?!?!? I'm 25 and scared to death that this thing is going to kill me. Why can't I beat it when all I hear is how curable thyroid cancer is?!?!?!?!?!?? I need help!!! Anyone?!?!:confused:

Deedah
November 21st, 2007, 05:58 PM
Hi dink,
So sorry to hear that your cancer keeps recurring. If you ask me you seem to be beating it quite alot. Perhaps if you think of it with that frame of mind you'll continue to beat it.

I know, you probably think it's easy for me to say, but that's not true. I'm going through it too, and I'm a mess! Surgery last month took my thyroid, part of the parathyroid, and 6 lymph nodes. As a result I'm depressed, ridden with anxiety, feeling sick to my stomach, muscle aches, etc. etc.

If it's any consolation to you I'm going for RAI-150 on Monday. I really don't know what the numbers mean, but I'm going to assume that it has something to do with the dose of the meds you'll be getting. I haven't yet seen anyone speak about 150 millicuries on these message boards yet.

It's scares the crap out of me to think of being isolated. Yet, you've been through this a few times already. Whether you realize it or not, your experience is very encouraging to me.

I'm beginning to understand something about thyroid cancer.... besides the fact that it sucks. It really is beatable. You are a prime example of this. please don't lose faith....

I recently read about a woman whose cancer wasn't seen until it matastasized to her lungs. Poor thing thought it was over for her. That was 12 yrs ago. Keep fighting it with everything you've got. I need to believe I can beat this too.

I'm totally floored by the fact that I'm trying to help with where your head is at... when I thought I was the one w/no hope.

Thanks so very much for sharing your experience.

Happy Thanksgiving,
Deedah

Caledonia
November 26th, 2007, 09:41 AM
please dont lose hope. but you must feel worried it is only normal. i just hope you keep fighting it. :)

take care.............x....................

Deedah
November 26th, 2007, 11:25 AM
Hi guys,

I'm writing in Deedah's place today. I dropped her off at the hospital this morning for RAI 131... still waiting for her to call.
One thing I found out is that RAI 123, and RAI 131 are different types of meds... not different doses of the same meds. Linda (Deedah) is getting 150 millicuries. I have no idea about it, beyond the fact that it's a pretty high dose. As soon as I speak to her I'll let you know how it's going. Till then keep the faith!!!

Val

GD Women
November 26th, 2007, 03:44 PM
Thanks for the info on Deedah. Be sure to keep us up dated.

I always thought that 123 and 131 were the same radiation. 123 is a lower dose in which they use for uptake test and 131 is higher dose for treatment. Normally the are refered to as 1-123 and 1-131, 1- meaning iodine. 123 and 131 meaning radition.

Keep the board informed.

Deedah
November 27th, 2007, 09:46 AM
Good Morning GD,

When I visited Linda last night I questioned the difference between I 123 and I 131. The particular person who administers the RAI wasn't there, and no one else knew enough about it to give me a clear answer. At this point in time I'm very curoius to know, so I'm going to continue to inquire. Webmd had no specifics..... perhaps I'll google it.

I know for sure that it's not just a difference in dose. When Linda had a body scan last week the script said "4mci I 131 whole body scan". This shows that I 131 can be, and is used for testing; and that there are different doses (4mci). The fact that she had to take the meds on Wed, and come back for the scan on Fri is also evidence of the difference in strength. Yet, there were no special instructions or limitations during the time between taking the pill, and getting the scan 2 days later. However, as things are now, I can't have a normal hospital visit because of very strict limitations involving I 131.

With regards to sodium iodide it's my opinion that we're both right. Though I'm still not certain of this, I'm beginning to think the difference between I 123, and I 131 has to do with concentration of the radiation. Evidently, there are spicific doses of both I 123, and I 131. I know that because we were told by the Endo's medical assistant that Linda is getting "150 millicuries - a very high dose" of I 131. A completely different dose from the body scan last week.

All of this has me baffled, and I'm not going to give up until I find a reasonable answer. The problem is that I'm not in the medical profession, and therefore don't always understand the lingo. So I've got to find someone with enough patience and knowledge to break it down to comprehensible language. If by chance you find out before me I'd appreciate the info.

Thanks, Val

GD Women
November 27th, 2007, 09:50 PM
I 131 and 1 123 are the same isotopes of iodine.

A radioactive isotope is a substance that gives off radiation. Iodine can be made into two radioactive isotopes for medical uses: I-123 and I-131.

There are different 1 131 doses.

What is radioactive iodine:
Iodine (chemical symbol I) is a nonmetallic solid element. There are both radioactive and non-radioactive isotopes of iodine. Iodine-129 and -131 are the most important radioactive isotopes in the environment. Some isotopes of iodine, such as I-123 is the isotope used to take pictures of the thyroid gland (Thyroid Scan). and I-124 are used in medical imaging and treatment, but are generally not a problem in the environment because they have very short half-lives.


Where do iodine-129 and iodine-131 come from:
Both iodine-129 and iodine-131 are produced by the fission of uranium atoms during operation of nuclear reactors and by plutonium (or uranium) in the detonation of nuclear weapons.

What are the properties of iodine-129 and iodine-131:
Radioactive iodines have the same physical properties as stable iodine. However, radioactive iodines decay with time

Iodine is a nonmetallic, purplish-black crystalline solid. It has the unusual property of ‘sublimation,' which means that it can go directly from a solid to a gas, without first becoming liquid. It sublimes to a deep violet vapor at room temperature. This vapor is irritating to the eyes, nose and throat. Iodine dissolves in alcohol and in water. It melts at 236 °F.

Iodine reacts easily with other chemicals, and isotopes of iodine are found as compounds rather than as a pure elemental nuclide. Thus, iodine-129 and -131 found in nuclear facilities and waste treatment plants quickly form compounds with the mixture of chemicals present. However, iodine released to the environment from nuclear power plants is usually a gas.

Iodine-129 has a half-life of 15.7 million years; iodine-131 has a half-life of about 8 days. Both emit beta particles upon radioactive decay.

What are iodine radioisotopes used for:
Iodines are among the most widely used radionuclides, mostly in the medical field. Because of its short half-life and useful beta emission, iodine-131 is used extensively in nuclear medicine.

Its tendency to collect in the thyroid gland makes iodine especially useful for diagnosing and treating thyroid problems. Iodine-123 is widely used in medical imaging, and I-124 is useful in immunotherapy.


Iodine's chemical properties make it easy to attach to molecules for imaging studies. It is useful in tracking the metabolism of drugs or compounds, or for viewing structural defects in various organs, such as the heart.


A less common isotope, iodine-125, is sometimes used to treat cancerous tissue.

Iodine-129 has little practical use, but may be used to check some radioactivity counters in diagnostic testing laboratories.

Deedah
November 27th, 2007, 11:00 PM
WOW!!! I'm impressed. Where did you find this information? Now I'm going to read it again, and try to finally "get it". There's so much to learn... it's no wonder Deedah (Linda) wants me to stay posted in her absence... her brain hasn't been in learning mode lately.

FYI: So far Linda has been able to tollerate most side effects of the treatment. Her throat is very sore, everything tastes weird, and her glands are so swollen that her neck looks thick like a football player. Otherwise she's okay physically. The depression is what's really getting to her. Being isolated is difficult... to say the least. Hopefully those feelings will begin to subside when she comes home.

The Endo told her that next week he'll send her for another scan. If he feels it's necessary, she'll go back for I 131 again. How often can the treatment be done, and how much is too much? Are there limits?

Thanks so very much, Val

GD Women
November 28th, 2007, 01:23 AM
Hey Val,

I don't know how many or often RAIs for cancer. If you would have ask for Hyper/Graves' I could have given you an answer.

Give Linda my regards and tell her to suck on sour lemon drops or the sourest hard candy she can find. This helps with the sore throat which is probably do to saliva glands not producing the necessary juices.

Sending positive thoughts and prayers.

GD Women

Deedah
December 10th, 2007, 08:27 PM
Hi GD,

Just a note to keep you posted on Linda's condition. She had another total body scan last Wednesday, and bloodwork on Friday... will call tomorrow for results. I expect the news to be good... Linda isn't so sure of that. Since she began taking synthroid (0.125mg) last Monday she thought she'd feel great by now. I think it takes a bit longer than that to get regulated.

Always feeling tired, and very depressed has her worried... but with some convincing, she decided to get her ass back to work starting tonight - a light schedule. Six hour shifts 3 x's a week. I think that's the best thing for her. Bar tenders must be in good spirits - even when they're not. I'll let you know how it's working out. I'm praying it gives her the boost she needs to get back on track.

Again thanks for the moral support,
Val

GD Women
December 10th, 2007, 09:54 PM
Hi Val,


Thanks for the up date on Linda's condition. Tell her to be positive. Thinking positive helps with the battle. Also she is still young in treatment. It takes time to heal and that is after levels are stable at the correct levels. It takes Synthroid 6 to 12 weeks to have full effect to our system.

Depression and fatigue come with this due to going hypo but will subside as levels are regulated. Not to mention the cancer and surgery, all puts a toll on our system, in which we need plenty of time to heal.

Tell her not to be rough on herself for the healing time, most of us goes through it no matter, hyper, hypo or cancer, its just the way thyroid is.

She'll get there in her own healing time - it does get better. Tell her to keep the faith.

Keep on keeping us up date and tell Linda hi and she is in my thoughts and prayers......She's gonna make it! :)

Best to the both of you.

GD Women

Deedah
December 12th, 2007, 09:46 PM
Dear GD Women,
(and all members)

As you already know I'm not a thryoid patient. Yet, in a very short time I have grown to love and appreciate this message board... It has helped me to understand what my partner is going through. Without communicating, and reading about so many thyroid experiences, I'd never be able to comprehend the symtoms... or thier unique effect on each individual. I'd certainly never have realized the emotional end of the experience every one of you shares; and just how differently each of you responds to it.

At first I thought that speaking in Linda's behalf would keep her communication lines open. Now, I find myself wanting to check in on how you guys are doing. You have no idea how enlightened I've become as a result of all of you sharing your story... knowledge... heart.

Thanks so much,
Val