The THYROID Thread

[luvmarypoppins]

Does anyone know how many days AFTER RAI ablation before I can go off the LID?

I got to go off the day after the radiation. Let me just say you feel so nauseous that you dont feel like eating too much. My rad onc. gave me compazine, but I think zofran would have worked much better. Also I am sure they have gone over all the radiation stuff (precautions) with you. I stayed in the hosp. overnight as my dose was really high. The rad. onc. says people just normally dont do that, well she found out where my dh worked and his background etc. and he(my dh) said I should stay over night since I was so "hot". I think you have to go out for a blood test 2 days after too. My rad. onc. said buy some rubber gloves to touch the remote and computer keyboard with, get rid of the pets for a week, we dont have any etc.

Wisihing you all the best Micayla. Hang in there!! I'm praying for you. Gotta go to church. I might type some more later.

 

[mrsklamc]

So do people typically have to do the LID diet and a follow up scan every year?

That seems like a lot of rai over a lifetime?

I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.

 

[luvmarypoppins]

My rad, onc. told me she will decide what to do with me after my next scan in June, that will be the 2nd one and 1 year follow up. My rad. onc. is too laid back I think. She says - oh just because you are stage 4, dont worry, its just a number, yeah easy for her to say!! She did say this next time will be just a little radiation and 2 days of precautions, it will also be 14 months instead of 1 year and she doesnt seem to care about that either. I talked to someone else and I think its 3 years"? Is this right Christine?? I am hoping that since mine is rare she wont make me some test subject and keep going with this etc. I think 3 would be good and I dont know if it will still contiune but the endo does the blood work every 4 months. My rad. onc. says - so what are you going to do, stop at Burger King! (after I got out of the hosp)

 

[Christine]

So do people typically have to do the LID diet and a follow up scan every year?

That seems like a lot of rai over a lifetime?

I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.

I think that for the first few years (or until you have several "clean" scans) you will scan and do the LID annually. After you have your treatment (which will be a big dose of RAI), you will have tracer doses for your annual scans. they are about 2-5 mci per scan (versus 150 to 200 mci for treatment doses).

My schedule went something like this:

Surgery in August 95
Ablation November 95
Whole body post-ablative scan 2 weeks after later (Dec 95)
Follow up scan - June 95 (it was positive for activity so I had a treatment).
Whole body post-ablative scan 2 weeks later
June 96 - Follow up scan (still positive for activity so had treatment)
June 97 - Whole body scan (CLEAN--YIPPEE!!)
June 98 - Whole body scan (CLEAN - YIPPEE)
Doctor says I can wait a few years.
Then Thyrogen gets released. Doctor wants me to know spend my life scanning every year. I told him "NO WAY."
June 2000 - First Thyrogen scan (CLEAN)
June 2003 - Thyrogen scan (CLEAN)
June 2006 - Thyrogen scan (CLEAN--but had reaction to Thyrogen so I won't use anymore).

Next plan is to to come of Synthroid for 2 weeks--just enough to get TSH to raise and do a withdrawal Thyroglobulin test. Probably will no longer scan anymore.

All that for a freaking 1 cm papillary thyroid cancer!

 

[mrsklamc]

Holy cow. I had no idea. I thought this was a one time thing, then I started reading and talking with people online and realized they were doing it yearly. I'm sure I will deal somehow but that seems overwhelming to me right now.

One of the things I can't stand about my endo is that he doesn't seem to want to answer questions beyond the step that I am on RIGHT NOW. I am an information person, I want it all out on the table. My surgeon understood that and provided me copies of my ultrasounds, as well as the interpretations of my CT scans and ultrasounds. This guy either won't answer or gives vague answers, or he tells me one thing and then something different (i.e. he told me to start cytomel right away after surgery and then on my one week he was like, oh, you don't have to take that unless you have problems. $60 down the drain, thanks so much.) He told me I would have to wait a year to start trying to conceive and lots of things I am reading online say 6 months. If he comes back and changes it to 6 months I will be TICKED because we made a pretty big financial decision based on a year. Argh. Sorry for the rant.

I'm confused though- was your follow up scan June of 96?

 

[Christine]

. Sorry for the rant.

I'm confused though- was your follow up scan June of 96?

Not sure what you are asking...It was just one of my yearly scans after my treatment.

Early in my treatment, I also found that they were telling me that this was all a "one shot" deal and that things would be taken care of quickly. As time went on, they started letting me know that they would not be leaving me alone. Of course, a lot of that had to do with the fact that I couldn't get a clean scan right away. Had a gotten a clean scan, though, I still would have scanned yearly for awhile.

My advice to you based on all that I've heard is that you do not want to conceive until you've had that clean scan.

Also the RAI does "work" and accumlate in your body for about 6 months. I think one year is a better time to wait. By then you will be scanning again. If you get a clean scan after one year, I think it would be safe to try to conceive, but I am pretty cautious about that kind of thing.

 

[mrsklamc]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

 

[Christine]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

Hang in there--you are *almost* there. Truly, these are the worst days. I also want to add that usually the next day after the RAI you may feel a little worse. That is totally normal (I was not expecting that). I like to know exactly what will happen so I don't flip out. I felt a little flu-like--it totally wears you out but then, really, that is the worst of it. It is all an improvement after that. I will be thinking of you and hoping it all goes well.

 

[luvmarypoppins]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

Hang in there Micayla. You can almost see the light at the end of the tunnel. Will pray for you. Did they tell you what the actual dosage will be? I didnt feel so good after either, not flu like which christine described but I felt crappy and thought like there were gremlins running around in my stomach and I did feel nauseous etc. You are doing great girl!!

 

[mrsklamc]

Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired. Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know.

Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."

So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.

 

[Christine]

Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired. Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know.

Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."

So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.

I would be VERY surprised if they actually gave you a true tracer dose on Wednesday morning. They can give you something else (I think it is a dose of lithium or something) to see how fast you will excrete the RAI. Based on that test, they give more or less RAI. But, honestly, I would bet my last dollar that you are getting the ablative dose on Wednesday. The scan you may have to come back for 4-7 days later is what they call a "post ablative" scan. This is very common (see my schedule a few posts above). Any time they give you a large dose of RAI, they like to do a post-ablative scan. On very rare occasions they have been able to visualize distants mets with the high dose RAI--things that would not show up with a standard scan dose.

Don't fret about that at all--I was told by my technician that finding something like that is very rare and they hardly ever see it--only in people who have advanced disease.

 

[mrsklamc]

My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.

 

[Christine]

My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.

Good going. I am surprised that you got a tracer dose, though.

The reason the want you to keep up with the LID and no meds is that your thyroid gland absorbs and reabsorbs the iodine over a period of days. If you suddenly eat a bunch of iodized salt or you take meds that will make your thyroid less avid, you could interfere with the treatment.

 

[luvmarypoppins]

Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!

Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.

 

[Christine]

Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!

Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.

luvmarypoppins--You will find that that every doctor does something different. I too was allowed to resume my meds when I left the hospital. And when I was being treated, they weren't even doing the LID so there you go on that one!!! I didn't even do the LID until my 2000 scans and did not do the LID on any of my treatments--nor did most people treated before 1997 and most of us turned out fine.

I am a little surprised they gave Micayla a tracer dose. A "noted" thyroid oncologist totally objects to this as a tracer dose can "stun" your thyroid remnant prior to treatment. I will say that my surgeon gave me a tracer dose prior to my treatment but I thought it wasn't done anymore. They didn't know about "stunning" back then.

So you see, we all have some minor variations to our treatments and, for the most part, I believe all the doctors are doing what they believe is the best thing.

 

[Christine]

Just want to say to mrsklamc: Good luck and know that we are with you today as you go through your treatment!!!

 

[mrsklamc]

Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.

They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!

 

[Christine]

Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.

They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!

Glad to hear things are going well for you. I know the LID is awful. FWIW, I do think it helps so just know that you have done the best for yourself and optimized your treatment. You will never look back and say "Wow, I wish I had done better or had done the LID." With cancer treatments you need to do all you can to make sure you get rid of it!!!

So what do you think you'll eat on Wednesday. Most people routinely go for pizza or Mexican food!

 

[mrsklamc]

Thanks Christine! For about all of last week I REALLY wanted a cheeseburger and a milkshake, but Friday I was watching standup on comedy central and they kept showing commercials for the cheesy gordita crunch at Taco Bell- I think that's in the lead- it's the cheese that's really making this hard. Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.

 

[Christine]

Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.

I think I know what one you're talking about. Not fun. Everything just slows down so much, it is really unavoidable.