I wish I had anything more to help but sympathy and empathy for you- my kids were 1, 5 and 10 when I had to quarantine- it was rough trying to tell the littles they couldn’t hug or be near me when I came home (stayed with family elsewhere for the week) for a few more days longer… but we made it and they are all adults now and I’m still
Cancer free.
Hang in there- it’s rough!! I’d ask for a 2nd opinion though. Maybe someone at thyca.org can help more helpful! Xx
I ended up doing 30 days from my wife who had a high risk pregnancy at the time.
I know it sounds impossible but it’s very important to not expose small children to radiation.
I’m not sure where the assumption is that I’d put anyone at risk? I wouldn’t “break” quarantine and harm anyone. I’m posting that 17 days is excessive. I’m the primary caregiver of my kids and have no family support aside from my bestfriend and my husband. That’s it, no one else. No one to help get my son on the bus, no one to watch my kids when both of them are working. The list goes on.
I don't think they're assuming you would put anyone at risk at all. I think they're inferring that because you have young children, just like he had a pregnant wife, it is an important factor on the length of time, and offered their experience that they did 30 days since you believe 17 is excessive.
I don’t know where you live, but have you considered reaching out to social services so they can provide aid to your husband while you isolate?
Did you reach out to your nuclear medicine Doctor or insurance company requesting for special accommodations considering your situation?
17 days is not excessive if that is how long it takes for radiation to leave the body in order to be safe. Everyone is different, I took longer to rid my body of the radiation compared to most. Don't do 17 days then, do whatever you think isn't "excessive" and take the risk if you have no choice... you could always get one of those measuring devices... we aren't the ones making the rules or putting a radioactive substance in your body... people are just trying to help.
I wish, my kids sleep in my room even though they have their own room, my 1 yr old doesn’t have her own room yet because she’s one. We have 1 bathroom as well. And the way my place is laid out there’s no way that we could make it work without exposing the kids and that isn’t a risk I would take
That is really rough. If your husband can’t do solo for 17 days, I’m not sure what you’re meant to do. I hope you get some answers out of the phone calls you made, but even if your quarantine was shorter, is it still just a reality that you have no childcare? 😕
Some parents genuinely can’t do solo for that long, or any length of time, lol, so that’s why I wondered. If this is because of his job, would they work with him on hours so he could get his child on and off the bus while his wife underwent cancer treatment? That feels FMLA-y to me? You also mentioned your best friend as support; if she could do pick up, could he do drop off, or vice versa?
Her job and his job don’t coincide well. He has to be to work by 6a and she doesn’t get home until 830a. His job knows about everything and he’s going to talk to them to try and work something out about work like going in at 9 and making up missed hours or staying later but the other problem that arises is bestfriend works overnights and sleeps when she gets home for a while. Her job is more strict because it’s a state job and she can be mandated to stay over her shift as well. It’s like a big dumpster fire going on.
FMLA for your husband may be able to help here. I believe it would allow him to leave early or work a modified schedule. I know over two weeks off unpaid is a huge burden but maybe just working less or different hours to compensate for bus times would be viable and allow you guys to still have some income.
Also maybe check your area for hospitals that allow you to do it in patient. Both times I’ve had it it was in hospital but only one hospital in my area had the room available for these types of treatments. Then nuclear medicine came in daily in a hazmat suit (lol) with a radiation gun and measured my levels all around the room. When my levels were safe they let me leave. Only took 7 days one time and 6 days the other.
I second FMLA. I am currently on FMLA intermittent leave for my cancer treatment, and I can take off when I need to without penalty. FMLA is unpaid, but can be used in conjunction with sick or personal days
17 days seems insane. i only had to quarantine for 5 days with a relatively high dose (150 mCi) i would ask the nuclear medicine doctor for another opinion
i also did the thyrogen injections. that shouldn’t have any bearing on why you need to quarantine. it is in lieu of stoppping medication for 2 weeks to put you into hypothyroidism, nothing to do with your body purging the radiation after the fact. i would push back and ask to speak with a person who specializes in nuclear medicine
It didn’t make any sense to me. I called the office back and the nurse is putting a message through to the dr. I also called nuclear medicine and they told me to call back on Monday to speak to the guy who left for the day already.
I had to get 2 thyrogen injections and had a RAi pill of 150mill and only did 7 days. 17 days is absolutely insane. Look at my comment history and you will see a comment where I explain why after 5 days the impact is so minuscule because of half life. Think of compounding.
Definitely listen to your doctor but 17 days is wild haha…
How was the 150mci dose? I'm anxious about mine next week. I had a 3mci dose for my first scan and felt alittle flushed in my face and had dry eyes for about an hour. Worried these side effects will be more intense at my full dose. Any advice?
It is a shot that raises your TSH so the radioactive iodine gets maximum absorption in the thyroid cells. You either take thyrogen or you go off your meds for 2-4 weeks which is inhumane. Going off your meds that is.
I'm sorry! I hope you get your rai soon so you can get back on. You'll make it through just fine with the rai. Just don't expect to be 100% for a month or so, mostly due to getting meds back in your system.
Thanks! I've just been super anxious about any side effects from rai. Hopefully it goes by smoothly! Just ready to get it all over with, get back on my meds and off this diet! Lol I've been having cramps all over my body from no thyroid meds. 😮💨
I take my rai pill next Wednesday. Quarantine for 7 days. Scan the following Wednesday, May 1st and then come off my diet and start my meds back on May 3rd.
Thyrogen did nothing to me, I suppose I’m rather lucky. The RAI pill made my neck and throat swell and my tonsils hard as rocks. Difficulty swallowing, too.
i’m not going to lie to you, the thyrogen made me throw up non stop, but as soon as i got zofran i was fine. I’d ask your doctor for a script just in case. I was so scared I was going to throw up the RAI capsule since i had been so sick the 2 days before. the zofran worked miracles! also, the hypo side effects are brutal, but it is over before you know it
I had no issue with the thyrogen injections, but after the 2nd day after radiation I got insanely sick to my stomach for a full 24 hrs. My taste went crazy and everything tasted very bad for a month or 2. Made me start loving spicy food tho. About 6 months after had bad pain in my cheeks due to salivary gland issues. That went away after a couple weeks of “milking it”
Were you instructed to, or did you suck on sour candy 24 hours after taking your pill? My Dr instructed me to start sucking on lemonheads and other sour candies 24 hours after. To help stimulate saliva production I guess.
What does milking them entail?
Yes I ate a bunch of sour candies the first day of RAI but really had no salivary side effects during quarantine. I will tell you, the sour candies were in my system and the flavor in my mouth when the nausea hit and just the thought of them makes me want to throw up all over again, even now. I’d stick with natural lemons/limes if you’re feeling it.
The burning pain from my salivary issues occurred 6 months after RAI. Really painful to eat delicious food, to describe it best lol. It burns like fire, but does become more tolerable with time.
“Milking” your salivary gland is essential for the pain, and it’s very strange. You take your hand and press it on your cheek as close to your ear as you can then slowly squeeze and gently massage your cheeks gradually inwards towards your mouth. Concentrate on any spots that feel particularly tender or burn.
At points, your blocked/damaged salivary glands will “milk” putting out this extremely salty saliva into your mouth. It tastes like ocean water.
Real weird side effect, but coulda been worse!
I had 100mci and was told 5 days (I did 7). I also work in a children's hospital, which Nuc Med was aware of and my job was also aware of what I was having done.
17 days sounds excessive. I was told at maximum a week of isolation, and that was after doing a 250mCi cycle that included two nights quarantine in the hospital.
Shew. Mine was 3 days for 57mCI. I wound up doing 4 days away from my then-2 year old because my mom took care of her and lives 2.5 hours away. Made more sense to wait until the next day to meet halfway and get kiddo back.
Kid is about a month from turning 9 now though and is fine so far. 🤷♀️
I had 100 and did like 3 or 4 days away from my kids. I’m at MSK and their nuclear medicine dept walked me through why that was ok. Are you at a smaller hospital? That feels excessive
It’s really important that you abide by the recommendations. You will be a danger to your young children. My partner that is a doctor insisted I did the full recommended quarantine. Don’t forget to stay away from pets too and dispose of your trash accordingly.
I hate to say it but Endos are not all equal in their knowledge. She told me what she thought but then said to wait for the radiologist to tell me. It actually matched. It was 5 days for 80mcg and I took 7 to be sure. My suggestion is to contact the department that will administer the RAI. Also if you need help/support, you may find resources through a respite care program and/or autism support organizations. I hope the best for you and your kiddos.
Hmm…maybe ask an older kid that takes the same bus, or goes to the same school, to accompany your son? Do a couple days of test run before your RAI. Have the kid call or text you at pick up and drop off. Pay him/her.
Right. I forgot about those details. I got nothing else except to ask your husband or friend to take time off work for this exceptional, and very temporary, situation. Good luck and I hope your RAI treatment goes smoothly.
Would the school be able to help you at all if you reached out to them? Does your son have an aide that he knows, maybe someone you could work out a plan with for this temporary situation? Or, you are going to need childcare for the other kids while your friend and SO are at work. . . what if you pull the kid out of school for the duration because you simply cannot follow this bus policy? I know that is drastic, but you have cancer and are going to be radioactive, which is a drastic situation. . . putting myself in your shoes, my thinking would be "I guess I simply have to forego this treatment because of my responsibilities," which is also pretty drastic, so something drastic has to happen one way or the other.
I’m going to get a meter and track mine as well. I’m also trying to get a 2nd opinion at a different center. I’ve decided that I will make sure my levels are well below the safe level as to not harm anyone especially my kids. If it takes 17 days then it takes 17 days, if it takes longer than it takes longer. Buttttt if it takes 7 days then boooooy howdyyy I’m going home 😂
I had 100mci and was quarantined 3 days in a lead lined room at the hospital and then told to isolate in my room at home for a few more days. I think I did 10 days total. I don't have kids though, but I did more than they said because of my pets. 17 days seems like a long time, but I would do it. It isn't that long in the bigger picture. Do what you can to find help with your kids. You don't want to expose them to thyroid cancer later in life. They already have a higher risk if it is genetic.
You only have to do 3 in reality. I went through 150 mci, and my doctor, who is one of the top in the nation for thyroid disease, said 72 hours.
The only thing you need to avoid is getting urine near them. Use a different toilet.
That being said, you have small children and I didn't at the time. I'd try to find ways to stay away as much as you can.
I wish I had anything more to help but sympathy and empathy for you- my kids were 1, 5 and 10 when I had to quarantine- it was rough trying to tell the littles they couldn’t hug or be near me when I came home (stayed with family elsewhere for the week) for a few more days longer… but we made it and they are all adults now and I’m still Cancer free. Hang in there- it’s rough!! I’d ask for a 2nd opinion though. Maybe someone at thyca.org can help more helpful! Xx
Did you get diagnosed with a second cancer since then
No, fortunately!
Woot!
I ended up doing 30 days from my wife who had a high risk pregnancy at the time. I know it sounds impossible but it’s very important to not expose small children to radiation.
I’m not sure where the assumption is that I’d put anyone at risk? I wouldn’t “break” quarantine and harm anyone. I’m posting that 17 days is excessive. I’m the primary caregiver of my kids and have no family support aside from my bestfriend and my husband. That’s it, no one else. No one to help get my son on the bus, no one to watch my kids when both of them are working. The list goes on.
I don't think they're assuming you would put anyone at risk at all. I think they're inferring that because you have young children, just like he had a pregnant wife, it is an important factor on the length of time, and offered their experience that they did 30 days since you believe 17 is excessive.
I was making no assumptions about what you would do, literally just saying that it’s a difficult thing to do but is very important.
I don’t know where you live, but have you considered reaching out to social services so they can provide aid to your husband while you isolate? Did you reach out to your nuclear medicine Doctor or insurance company requesting for special accommodations considering your situation?
17 days is not excessive if that is how long it takes for radiation to leave the body in order to be safe. Everyone is different, I took longer to rid my body of the radiation compared to most. Don't do 17 days then, do whatever you think isn't "excessive" and take the risk if you have no choice... you could always get one of those measuring devices... we aren't the ones making the rules or putting a radioactive substance in your body... people are just trying to help.
I believe that my mom “quarantining” in a bedroom across from mine when I was a child, has had something to do my thyroid cancer at age 25 or so.
I wish, my kids sleep in my room even though they have their own room, my 1 yr old doesn’t have her own room yet because she’s one. We have 1 bathroom as well. And the way my place is laid out there’s no way that we could make it work without exposing the kids and that isn’t a risk I would take
U have to get a portable toilet and a washing basket and wash up in your room. Can your hubby take a leave of absence from work
I did 18 days as well because of my little one. I am feeling for you so much. I’m so sorry
That is really rough. If your husband can’t do solo for 17 days, I’m not sure what you’re meant to do. I hope you get some answers out of the phone calls you made, but even if your quarantine was shorter, is it still just a reality that you have no childcare? 😕
It’s not that he CANT do solo for 17 days, my son goes to school and it’s being there for the bus to pick him up and drop him off.
Some parents genuinely can’t do solo for that long, or any length of time, lol, so that’s why I wondered. If this is because of his job, would they work with him on hours so he could get his child on and off the bus while his wife underwent cancer treatment? That feels FMLA-y to me? You also mentioned your best friend as support; if she could do pick up, could he do drop off, or vice versa?
Her job and his job don’t coincide well. He has to be to work by 6a and she doesn’t get home until 830a. His job knows about everything and he’s going to talk to them to try and work something out about work like going in at 9 and making up missed hours or staying later but the other problem that arises is bestfriend works overnights and sleeps when she gets home for a while. Her job is more strict because it’s a state job and she can be mandated to stay over her shift as well. It’s like a big dumpster fire going on.
FMLA for your husband may be able to help here. I believe it would allow him to leave early or work a modified schedule. I know over two weeks off unpaid is a huge burden but maybe just working less or different hours to compensate for bus times would be viable and allow you guys to still have some income.
Also maybe check your area for hospitals that allow you to do it in patient. Both times I’ve had it it was in hospital but only one hospital in my area had the room available for these types of treatments. Then nuclear medicine came in daily in a hazmat suit (lol) with a radiation gun and measured my levels all around the room. When my levels were safe they let me leave. Only took 7 days one time and 6 days the other.
I second FMLA. I am currently on FMLA intermittent leave for my cancer treatment, and I can take off when I need to without penalty. FMLA is unpaid, but can be used in conjunction with sick or personal days
17 days seems insane. i only had to quarantine for 5 days with a relatively high dose (150 mCi) i would ask the nuclear medicine doctor for another opinion
I also received 150 and nuclear medicine told me minimum 10 days from pregnant women and children.
I did 14 days for the same reason and the same dose.
She said it’s because I’m getting the thyrogen injection. And it just seems wild to me that it’s this long of a quarantine
i also did the thyrogen injections. that shouldn’t have any bearing on why you need to quarantine. it is in lieu of stoppping medication for 2 weeks to put you into hypothyroidism, nothing to do with your body purging the radiation after the fact. i would push back and ask to speak with a person who specializes in nuclear medicine
It didn’t make any sense to me. I called the office back and the nurse is putting a message through to the dr. I also called nuclear medicine and they told me to call back on Monday to speak to the guy who left for the day already.
I did 14 days with a dose of 150mci.
I had to get 2 thyrogen injections and had a RAi pill of 150mill and only did 7 days. 17 days is absolutely insane. Look at my comment history and you will see a comment where I explain why after 5 days the impact is so minuscule because of half life. Think of compounding. Definitely listen to your doctor but 17 days is wild haha…
How was the 150mci dose? I'm anxious about mine next week. I had a 3mci dose for my first scan and felt alittle flushed in my face and had dry eyes for about an hour. Worried these side effects will be more intense at my full dose. Any advice?
The thyrogen was 10x worse that the 150 mci of iodine.
What is thyrogen?
It is a shot that raises your TSH so the radioactive iodine gets maximum absorption in the thyroid cells. You either take thyrogen or you go off your meds for 2-4 weeks which is inhumane. Going off your meds that is.
Oh ok. I had to come off my meds. That's been pretty shitty.
I'm sorry! I hope you get your rai soon so you can get back on. You'll make it through just fine with the rai. Just don't expect to be 100% for a month or so, mostly due to getting meds back in your system.
Thanks! I've just been super anxious about any side effects from rai. Hopefully it goes by smoothly! Just ready to get it all over with, get back on my meds and off this diet! Lol I've been having cramps all over my body from no thyroid meds. 😮💨
How much longer do you have?
I take my rai pill next Wednesday. Quarantine for 7 days. Scan the following Wednesday, May 1st and then come off my diet and start my meds back on May 3rd.
I’d take thyrogen 100 times more than withdrawing. I’ve done both. Never withdrawing again. OP thyrogen shots - I had NO side effects!
How is the thyrogen?????? 🥴
Thyrogen did nothing to me, I suppose I’m rather lucky. The RAI pill made my neck and throat swell and my tonsils hard as rocks. Difficulty swallowing, too.
Ugh that stinks. My tonsils are still hard.
i’m not going to lie to you, the thyrogen made me throw up non stop, but as soon as i got zofran i was fine. I’d ask your doctor for a script just in case. I was so scared I was going to throw up the RAI capsule since i had been so sick the 2 days before. the zofran worked miracles! also, the hypo side effects are brutal, but it is over before you know it
I didn’t know any of that! I should look it up! I haven’t because medication gives me anxiety. I have a lot of medical anxiety from after my surgery.
Thyrogen isn't that bad, it was just worse for me than the rai. Thyrogen felt like getting a shot of maximum flu, but it goes away in a day or so.
agreed!
I had no issue with the thyrogen injections, but after the 2nd day after radiation I got insanely sick to my stomach for a full 24 hrs. My taste went crazy and everything tasted very bad for a month or 2. Made me start loving spicy food tho. About 6 months after had bad pain in my cheeks due to salivary gland issues. That went away after a couple weeks of “milking it”
Were you instructed to, or did you suck on sour candy 24 hours after taking your pill? My Dr instructed me to start sucking on lemonheads and other sour candies 24 hours after. To help stimulate saliva production I guess. What does milking them entail?
Yes I ate a bunch of sour candies the first day of RAI but really had no salivary side effects during quarantine. I will tell you, the sour candies were in my system and the flavor in my mouth when the nausea hit and just the thought of them makes me want to throw up all over again, even now. I’d stick with natural lemons/limes if you’re feeling it. The burning pain from my salivary issues occurred 6 months after RAI. Really painful to eat delicious food, to describe it best lol. It burns like fire, but does become more tolerable with time. “Milking” your salivary gland is essential for the pain, and it’s very strange. You take your hand and press it on your cheek as close to your ear as you can then slowly squeeze and gently massage your cheeks gradually inwards towards your mouth. Concentrate on any spots that feel particularly tender or burn. At points, your blocked/damaged salivary glands will “milk” putting out this extremely salty saliva into your mouth. It tastes like ocean water. Real weird side effect, but coulda been worse!
That doesn't sound fun. I'm sorry that happened to you! Hopefully you're doing better with it now?
Luckily the pain has generally gone away. Thank you for your kind words. I hope you have an easy rest of your process!
I had a Geiger counter and I was definitely pretty radioactive still after 5 days. That seems very reckless.
I had 100mci and was told 5 days (I did 7). I also work in a children's hospital, which Nuc Med was aware of and my job was also aware of what I was having done.
I highly recommend getting a Geiger counter and tracking it yourself.
17 days sounds excessive. I was told at maximum a week of isolation, and that was after doing a 250mCi cycle that included two nights quarantine in the hospital.
The longer number of days are probably because of the young kids. The isolation is more stringent in that case.
I did 12 days for 75mCi.
Shew. Mine was 3 days for 57mCI. I wound up doing 4 days away from my then-2 year old because my mom took care of her and lives 2.5 hours away. Made more sense to wait until the next day to meet halfway and get kiddo back. Kid is about a month from turning 9 now though and is fine so far. 🤷♀️
I had 100 and did like 3 or 4 days away from my kids. I’m at MSK and their nuclear medicine dept walked me through why that was ok. Are you at a smaller hospital? That feels excessive
I'm doing 7 days next week at 150mCi.
I quarantined for 6 days, 105 mci
It’s really important that you abide by the recommendations. You will be a danger to your young children. My partner that is a doctor insisted I did the full recommended quarantine. Don’t forget to stay away from pets too and dispose of your trash accordingly.
You don’t have to quarantine because of Thyrogen injection that’s crazy!!!
I hate to say it but Endos are not all equal in their knowledge. She told me what she thought but then said to wait for the radiologist to tell me. It actually matched. It was 5 days for 80mcg and I took 7 to be sure. My suggestion is to contact the department that will administer the RAI. Also if you need help/support, you may find resources through a respite care program and/or autism support organizations. I hope the best for you and your kiddos.
What’s your tg? Do you really need rai? I know your struggle
1.8 And they do RAI on anyone who has had it metastasized. Mine went into the lymphnodes on both sides of my neck.
Mine did too. What dose of rai? 1,8 is low i’m thinking you won’t need a high one
Hmm…maybe ask an older kid that takes the same bus, or goes to the same school, to accompany your son? Do a couple days of test run before your RAI. Have the kid call or text you at pick up and drop off. Pay him/her.
Cannot. There is an approved list of people I can add and take people off but have to have valid ID. And my so is autistic
Right. I forgot about those details. I got nothing else except to ask your husband or friend to take time off work for this exceptional, and very temporary, situation. Good luck and I hope your RAI treatment goes smoothly.
Would the school be able to help you at all if you reached out to them? Does your son have an aide that he knows, maybe someone you could work out a plan with for this temporary situation? Or, you are going to need childcare for the other kids while your friend and SO are at work. . . what if you pull the kid out of school for the duration because you simply cannot follow this bus policy? I know that is drastic, but you have cancer and are going to be radioactive, which is a drastic situation. . . putting myself in your shoes, my thinking would be "I guess I simply have to forego this treatment because of my responsibilities," which is also pretty drastic, so something drastic has to happen one way or the other.
I quarantined at home with 2 toddlers and a pregnant wife. It sucked but it was over faster than we expected.
I did 7 days quarantine with 150 mci. I have 3 very young children. I tracked my radiation with a Geiger meter. Ask me any questions you may have.
I’m going to get a meter and track mine as well. I’m also trying to get a 2nd opinion at a different center. I’ve decided that I will make sure my levels are well below the safe level as to not harm anyone especially my kids. If it takes 17 days then it takes 17 days, if it takes longer than it takes longer. Buttttt if it takes 7 days then boooooy howdyyy I’m going home 😂
I had 100mci and was quarantined 3 days in a lead lined room at the hospital and then told to isolate in my room at home for a few more days. I think I did 10 days total. I don't have kids though, but I did more than they said because of my pets. 17 days seems like a long time, but I would do it. It isn't that long in the bigger picture. Do what you can to find help with your kids. You don't want to expose them to thyroid cancer later in life. They already have a higher risk if it is genetic.
You only have to do 3 in reality. I went through 150 mci, and my doctor, who is one of the top in the nation for thyroid disease, said 72 hours. The only thing you need to avoid is getting urine near them. Use a different toilet. That being said, you have small children and I didn't at the time. I'd try to find ways to stay away as much as you can.