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Old 02-18-2007, 06:34 AM   #1
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Radoactive Iodine for Thyroid Cancer Questions

Hi I had thyroid cancer and had my thyroidectomy in January. In March I will be going for radioactive iodine treatment. I am a very nervous person and the more I know about it the more comfortable I will be. Has anyone had RAI in New Hampshire before? What is it like? What is the scan like? I'm sure I'll have more questions but I'll start with those for now.

Thank you,
-Kevin

 
Old 02-18-2007, 08:05 AM   #2
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Re: Radoactive Iodine for Thyroid Cancer Questions

Kevin,

What did your path report show? How are you feeling? Oleander

 
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Old 02-18-2007, 10:45 AM   #3
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Re: Radoactive Iodine for Thyroid Cancer Questions

I had my RAI in March too (2 years ago!), and it's a very lucky month---mine worked, and so will yours!

Sorry I don't know how it is there, but it doesn't just vary state to state, treatment also varies facility to facility. My friend in a manhattan hospital went hypo, had a micro-dose, no scan, then 3 months later had a whole body scan to check that it worked.

In my hospital only a few miles and one county away, I had a very large dose, a scan of my whole body before, 2 days later took the pill, 3 days later went on meds, and took another whole body scan.

The best thing about it, despite feeling yucky hypo, is that you know you're in the home stretch, and soon you will be cured and over this episode of your life....best of success!

 
Old 02-18-2007, 12:29 PM   #4
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Re: Radoactive Iodine for Thyroid Cancer Questions

Thanks Reece, I have the option of going to Manchester Nh and doing an overnight and one scan 2 weeks after. OR I can have a scan locally and then go to Boston MA to get my dose or RAI and then come home and stay in my house for 2 days. I get really nervous driving in the city and Manchester,NH is closer to me so I guess that seems like the easier way to go. I did want to do it at home, but oh well. I don't want to drive into Boston either. I am a very nervous person so I am nervous about driving into Boston, but on the other hand nervous about the scans and being locked in a room at a hospital overnight if I end up doing it that way.

Oleander, to be honest with you i don't know what a path report is. I know that during the surgery the surgeon took out 8 lymph nodes(along with the thyroid glands, of course), and out of 8, 5 we cancerous. That is why I have to go along with this scan. Sometimes this all just seems to be so much as I just turned 25 a few weeks ago.

As for how I feel, I feel like I'm Hypo all over again, except with more symtoms than I have ever experienced. It's not very fun at all, but I'm trying to cope. I am going on tuesday to have my first bloodwork to check my levels since surgery. I talked to my Endo on the phone the other day and he said that with the dosage that I'm on(.175 mg of Levoxl) I should not be hypo. So if the bloodwork does not show that Im hypo, could it just be stress?Another thing I thought of is the levoxyl. Could it just be the meds? Maybe if I switched to synthroid it would help? I know that I have had generic meds before, and my body never agrees with the generic stuff. I always have some of the same symptoms, easily agitated, stressed, anxious, memory loss, cold. All of the hypo symtoms, but also some of the same symptoms that I've felt when I took the generic meds. Has anyone else had problems with levoxyl or generic meds before?

Sorry this post is so long. I just love having people around that have gone through this before, it's much more assuring than talking to people that have not gone through issues like this.

Thank you!
-Kevin

 
Old 02-18-2007, 12:42 PM   #5
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Re: Radoactive Iodine for Thyroid Cancer Questions

sorry you are going through such a tough time and sorry that you had to have all the surgery i think that you might have got the worst bit out of the way the surgery!! thats very brave of you 8??? glands i didnt know we ahd so many anyway i have an ultra soung tom on my scan and i hope all is well i get tender on the left side but its kind of behind my left ear so it could be e&t not sure?? where did you have pain and the glands under my jaw are always up i dont know how much they will scan>???? but i hope thye do my whole throat they may not as it is just a thyroid scan?? anyway lke you said really you are on a home straight and yopu will soon feel better sending you hugs from the uk and good luck with the rai love from pursiexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 
Old 02-18-2007, 01:54 PM   #6
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Re: Radoactive Iodine for Thyroid Cancer Questions

Kevin:
Glad you got the thyroid out and are going through RAI. I am 6 months post RAI. I am 39 and have 2 small kids had pap cancer with one node invasion. They gave me the maximum dose - 150 millicuries which is what I suspect you'll get since a few nodes are involved. Better to zap it now when you can. Gee, you are lucky to get a choice. I had to stay in the hospital for two days. It wasn't bad. I prepared for it so I wouldn't freak out. I don't blame you for not wanting to drive in Boston. If you can and are legally allowed to stay at home consider doing it. Try to limit your contact with common things like the phone, remote, tv, etc. The people at the hospital wrapped everything in plastic wrap. A good idea of you will be alone at home. Also, change your sheets often, take frequent showers and wash the towels after each use. Change your toothbrush after the RAI as well. Get sour altoids to suck on as soon as you swallow the capsule. If you have kids, consider staying away from them - say at a hotel if you can. Don't know if you live alone. It is definately recomended that you stay away from people during the first two - three days.

I wouldn't worry about changing your meds now. you will be going off of them soon for the RAI. The scan is no big deal. I went in two (maybe three) weeks before the RAi and had the I-123 scan done to see where all the thyroid tissue was post op. Then had the RAI three weeks later. Had to go off all meds except Cytomel. See if you can get your doc to prescribe this short term. Then had eliminate the iodine from my diet. The LID. This is recommended as well. After the RaI I went back for a whole bod scan a week later (no medicine involved). That's it.

I am still trying to regulate my meds. It will take some time. Please let us know if you have more questions. Don't worry, the hard part is over. There is a cure and thyroid cancer is treatable!

Kathy

 
Old 02-18-2007, 07:37 PM   #7
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Re: Radoactive Iodine for Thyroid Cancer Questions

Since you are preparing for RAI soon anyway, it doesn't pay to go on synthroid until it's all over. You're on cytomel which goes out of the system quickly anyway, and they'll probably stop that 2 weeks prior anyway.

When you get on synthroid, after RAI, after you finally get to a decent dose, you will feel much better.

If you live with kids, you would probably want to stay in a hospital. I couldn't stay in the hospital, not an option here in NY, but, I would have preferred it, because I had kids and finding a place to stay was a pain. If you don't have kids it doesn't matter if you stay or not. You feel yucko because you are hypo, and you don't care where you are. And nobody else can drive you a long distance because of the exposure when you take the pill,

so go for whatever is easiest and simple. There's nothing to fear, it's just a weird experience because you are "radioactive" but you really don't feel anything. The scans are not a big deal, you lie down, relax, and your body gets scanned---I used an MP3 to stay relaxed.

Last edited by Reece; 02-18-2007 at 07:39 PM.

 
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