Hi all - couple of questions for those of you who've had RAI after TT for cancer. Curious how many of you only needed one RAI treatment? Just recovering from RAI & couldn't get straight answer from nuclear medicine doc about needing further treatment (s) down the road. Also - how long after the RAI before you started feeling like "yourself" again? I'm 9 days out from RAI and beginning to feel somewhat better, but not great.
Yay!!! You are done! You've killed the cancer, congrats!!
Your endo is the best person to talk to about the follow up plan.
What was your dose????
I did not need another treatment (I'm 3.5 years out) after my quite large dose (175 millicuries). I had a follow up scan one year after the first dose, but I didn't go hypo, I used thyrogen.
I was hypo with no meds for about 6 weeks, and my doctor put me on meds too gradually, so it took me 3-4 months to get to the right dose, and several more weeks to feel better.
My symptoms were not from RAI---I felt bad because of no thyroid hormone, not the RAI. But I did lose my sense of taste several weeks later for a few weeks.
Most people get to feeling better a couple of weeks after starting meds......hope you get back to yourself soon!
Hey TC!! I agree with Reece, it's probably the hypo that's making you feel bad. I'm 6 days out now, on synthroid for 4 days, and I'm still pretty weak and tired. I keep trying to do more than I should, lol, because I keep thinking, "I'm done!!! It's over! I can go back to normal life now!" But we'll have to keep reminding ourselves that, until our meds are regulated, we're NOT back to normal.
Did they do a follow-up scan? Im surprised they won't tell you one way or the other if you have to do more RAI treatments. My doc gave me a 50/50 chance of having to do it again in 6 months, even though I got a whopping 200 millicurie dose. I have my scan tomorrow and then meet w/ my doc next week again to find out if I really do need another round.
Oh that's music to my ears Reece! I was given "152.6 mci." That's kind of funny! The ".6" part! I was under the mistaken impression that when I had my followup scan (which was today!) the docs would be able to tell me if they got all of the cancer or not? But alas.............they won't know until approximately a year from now when they do another scan.
I am very interested in looking into the thyrogen treatment vs having to go completely hypo again Now that I've experienced that, I would really rather NOT have to do that again. I just feel lifted up knowing they got yours in one treatment! That is very good news!
I have no doubt that much of what I'm feeling is from being hypo, but then the RAI really did mess with my GI tract as well That has been...........umm...............less than fun And I'm with you Desert Rose on the metallic tasting thing - and even WATER! GHEESH!!! I'm excited for you that you will be able to return home soon. I will see my endo in appr 3 weeks so will get more info then re: future treatment, and she'll also do labs that day so that will be my first look at my levels. Take it easy Desert Rose! I know what you mean about feeling like it's behind us now! Here's to feeling better & better these next few weeks
So you really have to wait a WHOLE YEAR before they can even tell you if you have to do the RAI treatment again? Ugh. My scan was yesterday and I was told the Dr. would call me today or Monday to tell me if I have to go in again in 6 months or a year for another RAI treatment. This whole thing started because hubby and I want to try for another child. I have to wait at least 6 months after RAI (more like a year) so I'd rather get it done ASAP if I have to do it again anyway. I agree with you, it will STINK to go hypo again. But, I guess you do what you gotta do.
I hope every day you feel a wee bit better, dear. Hope the....GI problems are clearing up, lol. I got that mildly as well. Honestly, I wonder if it's because I started eating dairy again...You still have the funny taste in your mouth? I do too, it's getting really old, lol.
Reece, it was SO great to hear your story and that the first RAI treatment was all you needed! Gives us hope, so thank you. What is thyrogen? Can you go on that for the scan so you don't go hypo? Sounds promising!
thyrogen is a drug that is used all over the world for rai treatments and scans. For some reason, in the US, they prefer for treatment, that you go completely hypo. However, the FDA has approved the drug thyrogen for scans.
So when I went for my scans a year later, I took two shots of that (it's pricey but my insurance covered it), and then didn't have to go off meds. It was sooo much easier.
My follow up was a year later, because they said with my dose, I wouldn't be able to take RAI for another year anyway. It takes 3-4 months for the RAI to do it's destruction work. When they do the immediate whole body scan, I think they are trying to make sure that the body "uptook" the iodine, and also look for spread and other places where the cancer/tissue might have traveled to.
Many people on here, and my friend had the follow up scan 6 months later. Definitely ask for thyrogen!
Hey Reece & Desert Rose! God love ya for your support and feedback! I tell ya! For two people who I've never met in person, you two are quickly becoming my best buds I thank you both!!!
Reece's description of the followup and timing of it is exactly what was explained to me. I Googled thyrogen last night. Looks promising. I'll definitely be checking into that as an option.
Yes Desert Rose my tastebuds are STILL off!?! And, for all that I've gone through these last 5 months, for some reason this one thing is really ***irritating*** me!?! Go figure - of all things - the 3 hour surgery - all of my breathing/swallowing/speaking issues due to the vocal cord paralysis...........having to wait for the RAI.............all that going hypo entailed..................but..........t ake away/alter my tastebuds and watch me get really irritated!! LOL!!! SNORT!!!!!!! Reece - did you have the altered tastebud thing too??
Ahh - it's always the little things, isn't it? Okay - keep me posted Desert Rose as to how you're progressing. I got the okay from my endo's office today to stay on the Cytomel along with the Synthroid at least until I see her in about 3 weeks. It's helping - but - like you - I'm still way more fatigued than I'd like to be. I'm taking my first dance lesson next Tuesday since I had to go hypo. My ballroom teacher is Italian and is so happy that I'm returning to dance. I can hardly WAIT to get back on that ballroom floor! I'll let you know whether I make it through alright or collapse in exhaustion! LOL!!
Hey Desert Rose! Haven't seen a post from you in a few days. Just wanted to check in with you - are you okay?? Just thinking of you and wondering how it's going since you returned home. Sending healing prayers your way and angels to deliver them
Ah, TC, you're the best! Sorry I haven't posted in a while. I started work again Monday (part-time reading teacher) and my sister and nephew came visiting this week, too. It's been SUPER busy. She came to take care of my daughter (her daycare doesn't start back up for another week) but my sis got strep throat so it's ended up being ME taking care of her and both of our 2 year olds, haha! Good thing I'm feeling so much better
How are you doing? Up and running yet? How is your dance going? I hope you're able to keep up with your busy life. And how's the taste thing? Mine's not much better I got a bunch of those individual iced tea and Crystal Light packets because otherwise I just can't drink water. AND even though you'd THINK I would eat more healthy because everything tastes funny anyway, all I WANT to eat are comfort foods and foods with great texture (like bread and pasta and other not-so-good-for-me carbs). Sigh, I haven't lost any weight yet, but maybe I'm wishing for this too soon.
Hey Desert Rose! Thanks for the reply! I was getting concerned about ya - never stopped to think you'd be feeling so good and were ***that*** busy Sorry to hear about the strep throat Hope your sis is feeling better?? Yes - I know what you mean about the tastebud thing............it's REALLY getting old!?! And I'm with you on the water thing - and I'm usually a big water drinker, but it tastes the worst of all...............SO metallic?? I'll be so happy to have those tastebuds wake up..........or whatever they need to do to return to normal. I've been drinking Gatorade - that's been tasting pretty good.
I had my first dance lesson yesterday and I did better than expected! I made it through the entire 45 minutes - YAY! I was sweating head-to-toe and it felt great to break a sweat again! My energy is returning bit by bit - I am so grateful for that. Hope the teaching, and company is all going well. My sister is visiting me right now too! Thank God for sisters Okay - I'll stop worrying about you now Take good care!!
Glad you got through RAI. Eat all the comfort foods you want right now. There's time to diet later.
Did you go straight to your father's after the RAI ? My friend has hyperparathyroidism which is rare to begin with & even rarer in someone who was never exposed to radiatio. One time she drove someone home after RAI treatment. She is wondering if she would have been exposed to enough radiation from that incident.
Do patients receiving radiation (RAI) get to go straight home after treatment. Thanks. Fam
I'm almost 2 mos. out from RAI so I don't know yet if I'll ever need to have it again. Hope not. I'm 60 and as you get older you're more likely to get side effects from medications and such, but I had absolutely no side effects from RAI. That was a relief because the Tapazole I was on before gave me the bad taste thing for a few months and then that went away and my hair started falling out in clumps. I was begging to get off that. I couldn't take PTU because it messed up my blood levels. My endo told me that some people will feel extra good a few weeks or so after RAI, and luckily I turned out to be one of them! For the past month I've felt better than I have in years. We moved to another house about 4 weeks ago and I had so much energy it was insane! I just didn't get tired at all, and now that I have my muscles back after years of being undiagnosed hyper and having a thyroid storm, I could actually lift and carry something heavier than a piece of paper and I didn't get out of breath at all. So far RAI has been a good experience for me, but we'll see what's down the road. My endo also told me that it can take at least 4 months minimum after RAI to start to go hypo. I get tested once a month right now to try to catch it on that cusp of normal to hypo. Hope you're feeling better soon.
I just started my first dose of RAI yesterday (Wednesday Aug 20). My throat got a little sore last nite and I had kind of a metallic taste in my mouth but neither was very bothersome. I just can't wait to get back on my thy. rep med which I can do tomorrow Oh, and it would be nice to start feeling better too LOL! I hope that also comes soon!
Hey Kcf! So - you said "first dose." Just curious what protocal you are doing. Are you having several smaller doses? I had a tracer dose on a Friday (2 millicuries) and then a big dose on a Monday (152 millicuries). I've been quite sick from it for a couple of weeks, but then again, we all react differently. lucky me Glad it's not too bad for you.
Actually I probably shouldn't have said "first dose" as we don't have a 2nd dose planned; it's a "maybe" on that. I had alot of thy. tissue left around my trachea, thus the high dosage, but it sounds like your dose was even higher. Did they say why? I rec'd 100 millicures yesterday and I get a follow up scan next Thursday to see if that did the trick. If not, I'm assuming another dose is in order. Sorry to hear you got sick from it. May I ask what kind of sick? (nausea, etc). So far so good here. Just SO tired!!! But that's just from thy. trouble itself
Hey Kc! Well, I had stage 3 papillary cancer which broke out of the thyroid......they also removed 15 lymph nodes, 5 of which were cancer. I'm guessing they gave me the dose they did based on the pathology and then also what they saw on the whole body scan. The good news for me was that they didn't see any cancer anywhere besides the thyroid/neck area! I was very relieved for that! I don't know what they saw on the whole body scan after the RAI as that info was sent to my endo and I won't see her for another 2 weeks.
My main problems from the RAI have been LOTS of nausea (making it difficult to want to eat anything), a metallic tase in my mouth, quite a bit of swelling of the salivary glands, sore throat and swelling in my throat which has effected my vocal cords (I also had bi-lateral vocal cord paralysis after my TT - the cancer was also completely wrapped around my right laryngeal nerve so they had to take it). Oh yea - and fatigue, fatigue, and did I mention fatigue!?! ***snort***!! I'm 2 plus weeks out from RAI now, and my symptoms overall are beginning to subside. I guess it just hit my system harder than some other folks. Oh well..............what are you gonna do?? Had to have it, you know Thanks for your post - I appreciate hearing how other folks are dealing with these treatments
Hello all! First, good news: the body scan shows the cancer didn't move to any where else in my body. YEAH! Not-so-good news: I have to do the RAI again in 6 months because there's still two "hot spots" on my scan But hey, if that's the worst that happens, I'm still pretty well off and can't complain too much.
Fam, I am SOOOO surprised they let your friend drive someone home from an RAI treatment!!! Yes, unfortunately, this probably exposed her to radiation. Was she in the car long? Was the patient in the front seat? They were sure to tell me that I had to drive myself so I didn't risk exposing anyone. Best of luck to her treatment.
Rexcatz, SO good to hear that someone actually feels better from RAI! Glad to hear you're off the Tapazole and hope all is well. What are you going to start taking when you do go hypo?
TC, we are so proud of you making it through your dance lesson!! Cheer! That is so awesome. I'm sure the rest is all uphill. How's your voice doing? Hope it keeps getting stronger, dear. And thanks for the Gatorade tip, I'll have to go buy some. I can't keep hydrating myself on Fresca
kcf, the symptoms I had from RAI are pretty typical: lots of swelling and sore throat during first two days, some nausea, metallic taste in mouth (which STILL hasn't gone away and is more annoying than you'd think, lol). The fatigue I figured was from having no thyroid meds, got almost immediately better after I could take Synthroid on day 3 of RAI treatment. I'm still not 100% yet, but feeling TONS better than when my TSH was 164
Sorry, this is a long post, but there was someone in here who asked about doses. Mine was a whopping 200 millicuries (which my Dr. told me was a double dose). This was due to stage 3 papillary that had spread to lymph nodes (though not as many as my sister-from-another-mother TC ). My cancer was also different because it didn't stay in tumors, it spread throughout the entire thyroid. Anyway, they said because of those two reasons we needed a huge dose and, as it turns out, need to do it again. So, yeah, I imagine they prescribe the dose based on the size and severity of the cancer. Any others know better than I do?
Hey-Hey Desert Rose! SO glad to hear from you Love the sis-from-another-mother - right back atcha Yea - I STILL have the metallic taste thing going on and.....................it is soooooo annoying For all that we've both gone through, this particular thing seems like a cruel joke?? Oh well................we'll just appreciate the taste of our favorite things once our tastebuds return! Hehehehe! What are you looking forward to tasting again? I guess I'd have to say - it's my coffee. I love coffee! The smell...........the taste...........the whole experience. It's strange to have it taste not-like-coffee?????
And on the medical side - I am happy for you that the cancer didn't spread (thank you God), but sorry to hear that you have to have another treatment in 6 months. Please know I intend on staying on these boards, so I'll be here for ya! I wish we had another way to communicate, but I know it's against the rules of the board, and I don't like breaking rules. Just know I'm here for ya!! Cheering you on!!! Go Desert Rose!! Come on taste buds!!!! Oh - and just an aside - I really was a cheerleader back in my high school days, so I am doing a high kick for you along with that cheer! LOL!! Sending you lots of love & healing & the quickest-recovery-possible of those tastebuds!!
Thought I would help you guys with the taste bud problem. I'm on Labetalol for high blood pressure which blunts the taste buds big time. I don't get the metallic taste but food just doesn't taste like it did before. What I miss most is the taste of spagetti sauce. Sweets, of course, come closest to tasting the same. I don't care much about eating. I could go the whole day & just have tea & toast but of course I don't. You would think I would be a size 6 but I've gained about 20 lbs because the drug also causes wt gain. Can't win for losing . Guess if I have to have a TT & Rai that will be the final blow. But if John McGain can stand 5 1/2 yrs of pain & torture & substandard food, guess I can muddle through whatever comes my way. You guys are good examples of how we can get through these thyroid ordeals. Fam
Hi Ladies,
So glad you are done with all of it, now you just have to get back to feeling well. Isn't it SUCH a relief when you finally come out the other side of all this? Desert, I also had 200 mci which was a large dose, and I did not have any mets, no spread beyond the right lobe, interesting how all protocols are different from state to state and even city to city. I had an ultrasound done recently, and the radiologist had to chek me and asked which hospital I was isolated in. I said, "I went home right after I swallowed the pills". He couldn't believe it, and he had just transferred from a city that is only 70 miles from my city...same state?? Odd. I have said on here before, It would be so much easier if there were set protocols, so everyone knew exactly what to expect. It's such a learning experience..........My metallic taste went away after a few weeks, I hope it does for you guys, too. Best wishes to all of you!!! Take care,
Lori
My doc gave me a 50/50 chance of having to do it again in 6 months, even though I got a whopping 200 millicurie dose. I have my scan tomorrow and then meet w/ my doc next week again to find out if I really do need another round.
Now that I've experienced that, I would really rather NOT have to do that again. I just feel lifted up knowing they got yours in one treatment! That is very good news!
That has been...........umm...............less than fun
And I'm with you Desert Rose on the metallic tasting thing - and even WATER! GHEESH!!! I'm excited for you that you will be able to return home soon. I will see my endo in appr 3 weeks so will get more info then re: future treatment, and she'll also do labs that day so that will be my first look at my levels. Take it easy Desert Rose! I know what you mean about feeling like it's behind us now! Here's to feeling better & better these next few weeks 
Glad to hear you're off the Tapazole and hope all is well. What are you going to start taking when you do go hypo?
That is so awesome. I'm sure the rest is all uphill. How's your voice doing? Hope it keeps getting stronger, dear. And thanks for the Gatorade tip, I'll have to go buy some. I can't keep hydrating myself on Fresca 
Yea - I STILL have the metallic taste thing going on and.....................it is soooooo annoying 
For all that we've both gone through, this particular thing seems like a cruel joke?? Oh well................we'll just appreciate the taste of our favorite things once our tastebuds return! Hehehehe! What are you looking forward to tasting again? I guess I'd have to say - it's my coffee. I love coffee! The smell...........the taste...........the whole experience. It's strange to have it taste not-like-coffee?????
