Any advice before RAI treatment???
Thanks
Comments
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RAIemma54 said:RAI
You will probably need to stop running (temporarily) soon. I overdid it with activity before my RAI and it was not good. You should rest. Good Luck! You will be fine.
Thanks for your comment. What did you feel? Why do you say you over did it? Thanks again0 -
Hi Sandysandykr said:RAI
Thanks for your comment. What did you feel? Why do you say you over did it? Thanks again
Once I got off the Cytomel in preparation for the RAI, I gradually started to feel more and more fatigued. I am a swimmer and could not possibly go to the pool. I also have my family that I take care of and I did not stop cooking, cleaning, laundry, paying bills, (plus I had a small part-time bookkeeping job). So I dragged myself through these activities and my blood pressure spiked dangerously high. I was at the point where I could not get up, so my husband and girlfriends turned on the air conditioner in my house (it was a nice summer day) and rubbed me down with ice and just stroked my arms to relax me. I had to stay in bed until my RAI which was only 2 days away. The doctor wanted me to go to the hospital if my blood pressure did not go down, but it did because of the great care I received from my hubby and friends. After RAI, I stayed in my bedroom and my hubby did everything. So all I am saying is that if I can help anyone on this site and I hope I can, I hope I can help you by telling you to honestly allow yourself to take it easy before you collapse like I did. Just rest. You owe it to yourself and you will be up and about in no time. I am so glad you wrote back because I've been thinking about you all day!
Oh just want to add one more thing. Perhaps you will be one of the many who are not affected by the depletion of metabolic hormones in prep for the RAI. That would be great, however, if you feel that fatigue just go with it.0 -
RAIemma54 said:Hi Sandy
Once I got off the Cytomel in preparation for the RAI, I gradually started to feel more and more fatigued. I am a swimmer and could not possibly go to the pool. I also have my family that I take care of and I did not stop cooking, cleaning, laundry, paying bills, (plus I had a small part-time bookkeeping job). So I dragged myself through these activities and my blood pressure spiked dangerously high. I was at the point where I could not get up, so my husband and girlfriends turned on the air conditioner in my house (it was a nice summer day) and rubbed me down with ice and just stroked my arms to relax me. I had to stay in bed until my RAI which was only 2 days away. The doctor wanted me to go to the hospital if my blood pressure did not go down, but it did because of the great care I received from my hubby and friends. After RAI, I stayed in my bedroom and my hubby did everything. So all I am saying is that if I can help anyone on this site and I hope I can, I hope I can help you by telling you to honestly allow yourself to take it easy before you collapse like I did. Just rest. You owe it to yourself and you will be up and about in no time. I am so glad you wrote back because I've been thinking about you all day!
Oh just want to add one more thing. Perhaps you will be one of the many who are not affected by the depletion of metabolic hormones in prep for the RAI. That would be great, however, if you feel that fatigue just go with it.
Once again, thanks for your reply. Since I've been going thru this I have been searching the web for others involved in sport...........to hear their experiences. I think that I have been listening to my body, but am still pushing. Today I did a blood test , and we'll see what my TSH is, maybe it hasn't gone up much yet and therefore i feel ok. Anyway, thanks
Sandy0 -
RAIsandykr said:RAI
Once again, thanks for your reply. Since I've been going thru this I have been searching the web for others involved in sport...........to hear their experiences. I think that I have been listening to my body, but am still pushing. Today I did a blood test , and we'll see what my TSH is, maybe it hasn't gone up much yet and therefore i feel ok. Anyway, thanks
Sandy
I had RAI (154 mCi) on Dec. 18. I teach high school. I knew that I would need to change my usual activities, i.e. I spend all day with teenagers and then grade papers for three hours every night. Despite the financial hit, I worked part-time from when I returned to school post surgery until finishing RAI. It was the right decision. I felt progressively worse in the three weeks I was off cytomel prior to RAI. The changes were incremental and cumulative. This is a time in your life when it is okay not to push yourself.0 -
well my TSH is up to 22 andandreapj said:RAI
I had RAI (154 mCi) on Dec. 18. I teach high school. I knew that I would need to change my usual activities, i.e. I spend all day with teenagers and then grade papers for three hours every night. Despite the financial hit, I worked part-time from when I returned to school post surgery until finishing RAI. It was the right decision. I felt progressively worse in the three weeks I was off cytomel prior to RAI. The changes were incremental and cumulative. This is a time in your life when it is okay not to push yourself.
well my TSH is up to 22 and I have one week to go. Thank you for your advice. I understand what are you are saying, just good to have it reinforced.
So far so good0 -
TSH at 50 will feel differentlysandykr said:well my TSH is up to 22 and
well my TSH is up to 22 and I have one week to go. Thank you for your advice. I understand what are you are saying, just good to have it reinforced.
So far so good
Hi,
I had the RAI a year ago. I, too, felt pretty good the 2nd week. At about the 2 1/2 week mark, however, I could sense a huge change coming. The best way I know to describe it is that I felt like I was walking through quicksand, or walking against water. I remember thinking that I was probably walking at my normal rate of speed, and to anyone else I'd look normal, but inside, I felt like I was trudging along with a force pushing me backward. Also, I noticed my concentration level beginning to slip. At work, I would have to double-check things that I otherwise did pretty routinely. I had the labwork done at that point and my TSH had shot above 50. So, just be prepared for changes ahead.
As far as the actual RAI, I wish I had known some things going in. First, if you are accustomed to swallowing a pill by first placing it on your tongue with your fingers, then drinking the water, prepare yourself that you may not be able to do that. They told me not to touch the pill itself, so I had to toss it back in my mouth from the little cup they provided, which was not easy for me to do without feeling like I would choke on it. Also, I got two pretty rotten side effects, which they tell me are rare, but lucky me, I got both. So, just in case, I'll give you the heads up. I was terribly nauseous in the first few days after taking the RAI pill. What makes it worse is that you are supposed to be drinking tons of water to flush it out of your system, but with nausea, you really don't feel like drinking. I would suggest asking your doctor for an anti-nausea prescription, just in case . If this isn't possible, make your own preparations. I actually took migraine headache pills because they help my nausea, even if I don't have a headache. You can get Excedrin Migraine, Target brand, or whatever you choose. Also, Dentyne Ice Peppermint gum, or peppermints, leftover candy canes, could help. Though it may sound silly, look up pregnancy morning sickness online and get some anti-nausea ideas there. If my memory serves, I believe Ginger is one of the items that helps with nausea. The other side effect I had was that I lost my taste buds for THREE weeks. That was weird, and crummy. I'm sure everyone is different, but the only food I could even remotely get some flavor from was canned spaghettios (like the kids eat) - the Franco American brand, and those cinnamon rolls that come about 6 to a package and are covered with white icing. Perhaps Dolly Madison brand, I'm not sure. I have never been a person who is very into food as I'm a picky eater, but even I struggled with losing my taste buds because something with as strong a flavor as tomato soup, would just taste like nothing, and almost felt like it was cold on my tongue (even though cooked), almost as if the RAI pill had burned a layer right off my tongue or something. I'm sure that is not the literal, medical event that took place, but that's the only way I know how to desribe it.
Aside from those physical changes, I approached the whole RAI process VERY cautiously because I had a 6 year old and a 1 year old at the time. I was not taking ANY Chances coming into contact with them. I wore clothes I could throw away, and ate with a limited number of the same plastic utensils, and basically didn't let anything I touched cross paths with what my family touched. In other words, I wasn't putting my clothes into the same washer as theirs, use the same dishwasher, etc. But again, I was approaching it with as healthy a sense of paranoia as you can. Mostly due to my baby, who would need to be held, etc. I did not come near her until they "scanned" me as having ZERO radiation left in my body. Technically, they tell you you can sit next to your family members again at around the 3 day mark, but I spent the entire 8 days away from them until I had nothing left in me that could be hazardous even a tiny bit. I know this is just my personal feeling, and not what doctors advise, but it is what made me feel most comfortable, so I'd say to you, just do whatever your own comfort level allows. If you want to be extreme, don't let anyone tell you not to be, but if you are much more care-free, then just go with that and help yourself have as pleasant an experience with this as you can. Obviously, none of this is pleasant, but make it easy on yourself wherever you can.
I hope the RAI takes care of it for you and you are Cancer free from here on out.
Best wishes0 -
Thank you so much for takingCheated said:TSH at 50 will feel differently
Hi,
I had the RAI a year ago. I, too, felt pretty good the 2nd week. At about the 2 1/2 week mark, however, I could sense a huge change coming. The best way I know to describe it is that I felt like I was walking through quicksand, or walking against water. I remember thinking that I was probably walking at my normal rate of speed, and to anyone else I'd look normal, but inside, I felt like I was trudging along with a force pushing me backward. Also, I noticed my concentration level beginning to slip. At work, I would have to double-check things that I otherwise did pretty routinely. I had the labwork done at that point and my TSH had shot above 50. So, just be prepared for changes ahead.
As far as the actual RAI, I wish I had known some things going in. First, if you are accustomed to swallowing a pill by first placing it on your tongue with your fingers, then drinking the water, prepare yourself that you may not be able to do that. They told me not to touch the pill itself, so I had to toss it back in my mouth from the little cup they provided, which was not easy for me to do without feeling like I would choke on it. Also, I got two pretty rotten side effects, which they tell me are rare, but lucky me, I got both. So, just in case, I'll give you the heads up. I was terribly nauseous in the first few days after taking the RAI pill. What makes it worse is that you are supposed to be drinking tons of water to flush it out of your system, but with nausea, you really don't feel like drinking. I would suggest asking your doctor for an anti-nausea prescription, just in case . If this isn't possible, make your own preparations. I actually took migraine headache pills because they help my nausea, even if I don't have a headache. You can get Excedrin Migraine, Target brand, or whatever you choose. Also, Dentyne Ice Peppermint gum, or peppermints, leftover candy canes, could help. Though it may sound silly, look up pregnancy morning sickness online and get some anti-nausea ideas there. If my memory serves, I believe Ginger is one of the items that helps with nausea. The other side effect I had was that I lost my taste buds for THREE weeks. That was weird, and crummy. I'm sure everyone is different, but the only food I could even remotely get some flavor from was canned spaghettios (like the kids eat) - the Franco American brand, and those cinnamon rolls that come about 6 to a package and are covered with white icing. Perhaps Dolly Madison brand, I'm not sure. I have never been a person who is very into food as I'm a picky eater, but even I struggled with losing my taste buds because something with as strong a flavor as tomato soup, would just taste like nothing, and almost felt like it was cold on my tongue (even though cooked), almost as if the RAI pill had burned a layer right off my tongue or something. I'm sure that is not the literal, medical event that took place, but that's the only way I know how to desribe it.
Aside from those physical changes, I approached the whole RAI process VERY cautiously because I had a 6 year old and a 1 year old at the time. I was not taking ANY Chances coming into contact with them. I wore clothes I could throw away, and ate with a limited number of the same plastic utensils, and basically didn't let anything I touched cross paths with what my family touched. In other words, I wasn't putting my clothes into the same washer as theirs, use the same dishwasher, etc. But again, I was approaching it with as healthy a sense of paranoia as you can. Mostly due to my baby, who would need to be held, etc. I did not come near her until they "scanned" me as having ZERO radiation left in my body. Technically, they tell you you can sit next to your family members again at around the 3 day mark, but I spent the entire 8 days away from them until I had nothing left in me that could be hazardous even a tiny bit. I know this is just my personal feeling, and not what doctors advise, but it is what made me feel most comfortable, so I'd say to you, just do whatever your own comfort level allows. If you want to be extreme, don't let anyone tell you not to be, but if you are much more care-free, then just go with that and help yourself have as pleasant an experience with this as you can. Obviously, none of this is pleasant, but make it easy on yourself wherever you can.
I hope the RAI takes care of it for you and you are Cancer free from here on out.
Best wishes
Thank you so much for taking the time to write all that you did. Thats what these boards are wonderful for. I am starved to hear other peoples experiences. Well, I am scheduled for the RAI next monday. I was told that they would do it if my TSH is over 30, so hopefully, I will not feel as you did...........but I have already had some similar feelings, like moving in slow motion.
I have older kids, so I think it will be easier in the house too. Most of the day they are out at school etc, so I don't need to stay in one place. I was told that they give anti nausea meds preventively (as you suggested).
Did you such on candies? I have read that some people recommend that.
I have a positive attitute, my endocrinologist said something like , today Thyroid cancer is treated more like a chronic disease than a cancer...........sort of liked that.
Again
Thanks0 -
I wish you the best of luck
I wish you the best of luck will you please let me know how it is I to soon will need RAI after my second surgery. I will Pray for you0 -
Hi Sandy,
I wanted to share
Hi Sandy,
I wanted to share with you my experience with the RAI as well. My reaction was similar to others listed here. I was given 3 pills, which totalled 150 mci's. They came out of what looked like a space ship! lol.. They handed them to me in a cup, you cannot touch them. Soon as you swallow them, they will make you stand up and they will measure your radiation levels with a Geiger counter. It's crazy!! Within a few hours I was very sick! I became extremely ill over the next 8days! After the initial 3 days of isolation (I gave myself extra days paranoid I would damage my husband) It was impossible to drink lots of fluids with all of the nausea. I was taking nausea medications around the clock and they did not help me, when I was not vomiting, I had severe nausea and awful stomachaches and pains. I went from the bed to the bathroom and that was about it for 8 days! I could not even have anything cooked in my home, the smells of everything made me very sick. No food smells, no perfumes, not even soap. It messed up my senses pretty bad. It all subsided except I still cannot taste everything yet. That was 19 days ago! Almost 3 weeks later and I still have a nasty metallic like taste in my mouth and my stomach just recently started acting normal again. The best tasting things are things with lemon/ lime flavor in them. 7Up was actually the only drink I could handle during those days. My husband actually called the dr because I was so sick, and the only thing he said is that it had to run it's coarse and to keep taking the nausea meds'. Good luck and I hope these things do not happen to you, but you do have to remain isolated and be sure not to prepare anyone’s food other than your own and use all plastic or paper utensils and plates. Throw all of it away after each use and wash your clothes separately from your families. Limit your contact with things for the first few days. Sour candies were recommended to keep your taste buds working. Good luck. Everyone reacts differently.0 -
I will keep you allRedneckimber said:Hi Sandy,
I wanted to share
Hi Sandy,
I wanted to share with you my experience with the RAI as well. My reaction was similar to others listed here. I was given 3 pills, which totalled 150 mci's. They came out of what looked like a space ship! lol.. They handed them to me in a cup, you cannot touch them. Soon as you swallow them, they will make you stand up and they will measure your radiation levels with a Geiger counter. It's crazy!! Within a few hours I was very sick! I became extremely ill over the next 8days! After the initial 3 days of isolation (I gave myself extra days paranoid I would damage my husband) It was impossible to drink lots of fluids with all of the nausea. I was taking nausea medications around the clock and they did not help me, when I was not vomiting, I had severe nausea and awful stomachaches and pains. I went from the bed to the bathroom and that was about it for 8 days! I could not even have anything cooked in my home, the smells of everything made me very sick. No food smells, no perfumes, not even soap. It messed up my senses pretty bad. It all subsided except I still cannot taste everything yet. That was 19 days ago! Almost 3 weeks later and I still have a nasty metallic like taste in my mouth and my stomach just recently started acting normal again. The best tasting things are things with lemon/ lime flavor in them. 7Up was actually the only drink I could handle during those days. My husband actually called the dr because I was so sick, and the only thing he said is that it had to run it's coarse and to keep taking the nausea meds'. Good luck and I hope these things do not happen to you, but you do have to remain isolated and be sure not to prepare anyone’s food other than your own and use all plastic or paper utensils and plates. Throw all of it away after each use and wash your clothes separately from your families. Limit your contact with things for the first few days. Sour candies were recommended to keep your taste buds working. Good luck. Everyone reacts differently.
I will keep you all informed.........I'm on my way to buy 7 up and sour candies!!0 -
2 days post RAIsandykr said:I will keep you all
I will keep you all informed.........I'm on my way to buy 7 up and sour candies!!
an update:
my TSH did go up to about 75 and surprisingly I felt pretty good. I was working, swimming, doing most things.
The fateful day, thanks for the description of how to take the pill, pretty strange the whole thing. Took the pill and then they said "ok, you're in isolation, go home!" like do not pass GO do not get $100. Ever since I have pretty much been isolated in my bedroom. As far as how I feel...........just a tinge of nausea (had anti nausea pills), but the main thing is the fatigue. I suppose that as my TSH was rising, I was out of the house and on the go and then boom, I crashed!
Good news is that today I started the Eltroxin, 50mcg which I'm suppossed to increase until 150 until I see my endo, so I'm hoping to begin getting some strength.
sandy0 -
RAIRedneckimber said:Hi Sandy,
I wanted to share
Hi Sandy,
I wanted to share with you my experience with the RAI as well. My reaction was similar to others listed here. I was given 3 pills, which totalled 150 mci's. They came out of what looked like a space ship! lol.. They handed them to me in a cup, you cannot touch them. Soon as you swallow them, they will make you stand up and they will measure your radiation levels with a Geiger counter. It's crazy!! Within a few hours I was very sick! I became extremely ill over the next 8days! After the initial 3 days of isolation (I gave myself extra days paranoid I would damage my husband) It was impossible to drink lots of fluids with all of the nausea. I was taking nausea medications around the clock and they did not help me, when I was not vomiting, I had severe nausea and awful stomachaches and pains. I went from the bed to the bathroom and that was about it for 8 days! I could not even have anything cooked in my home, the smells of everything made me very sick. No food smells, no perfumes, not even soap. It messed up my senses pretty bad. It all subsided except I still cannot taste everything yet. That was 19 days ago! Almost 3 weeks later and I still have a nasty metallic like taste in my mouth and my stomach just recently started acting normal again. The best tasting things are things with lemon/ lime flavor in them. 7Up was actually the only drink I could handle during those days. My husband actually called the dr because I was so sick, and the only thing he said is that it had to run it's coarse and to keep taking the nausea meds'. Good luck and I hope these things do not happen to you, but you do have to remain isolated and be sure not to prepare anyone’s food other than your own and use all plastic or paper utensils and plates. Throw all of it away after each use and wash your clothes separately from your families. Limit your contact with things for the first few days. Sour candies were recommended to keep your taste buds working. Good luck. Everyone reacts differently.
Hi Sandy
I'm getting ready to start my thyroid scan on Monday. I had a TT 10/97 & hi dose RAI 12/97 so was not too excited to get the news my thyroid tissue was back. Twelve years ago, when I was admitted for the final high dose, I was taken to my lead lined room. The med tech held out a little lead looking cup for me to drink out using tongs to increase his distance from me. Yeah, I thought, this stuff is safe to drink! A pill sounds much more appetizing. I am very glad the need to go off medication is history as I swore I would never go through it again. Will find out soon enough re repeat surgery & ablation. Never vomited, but I felt worse during the lead up to the ablation off my cytomel. My TSH was >150 when I was admitted. Lived on ativan during those weeks and was still working 40hr+ each week (I'm an RN, and had been in oncology for 10+yrs at the time) Took at least 6mos to get rid of the silver taste to everything.
I do worry about the fact that nowadays I will be sent home instead of admitted. I sent my kids to CA to be w/their dad back then. Now I have dogs, cat & birds plus a husband to worry about. I am wondering if since the prep isn't as bad as previously, if that's why you were so sick with the RAI? Really not looking forward to any of this...thought I was done.
Carol0 -
Hope it will be easier thiscshobie1 said:RAI
Hi Sandy
I'm getting ready to start my thyroid scan on Monday. I had a TT 10/97 & hi dose RAI 12/97 so was not too excited to get the news my thyroid tissue was back. Twelve years ago, when I was admitted for the final high dose, I was taken to my lead lined room. The med tech held out a little lead looking cup for me to drink out using tongs to increase his distance from me. Yeah, I thought, this stuff is safe to drink! A pill sounds much more appetizing. I am very glad the need to go off medication is history as I swore I would never go through it again. Will find out soon enough re repeat surgery & ablation. Never vomited, but I felt worse during the lead up to the ablation off my cytomel. My TSH was >150 when I was admitted. Lived on ativan during those weeks and was still working 40hr+ each week (I'm an RN, and had been in oncology for 10+yrs at the time) Took at least 6mos to get rid of the silver taste to everything.
I do worry about the fact that nowadays I will be sent home instead of admitted. I sent my kids to CA to be w/their dad back then. Now I have dogs, cat & birds plus a husband to worry about. I am wondering if since the prep isn't as bad as previously, if that's why you were so sick with the RAI? Really not looking forward to any of this...thought I was done.
Carol
Hope it will be easier this time. Today was my first day "out" and boy was I happy. So far, so good, I haven't had any major side effects. I am now on 150mcg of eltroxin and hoping that it will quickly get into my system.
sandy0 -
upcoming RAI
Hello Sandy. I am on day 14 of being off my synthroid, in prep for upcoming RAI treatment. I've been reading your posts and see that you did't seem to have experienced any major problems with the RAI. Just wanted to check to see how you have done post RAI & how you are doing now. I am scheduled for labs on the 22nd & if my TSH levels have reached 30, we plan to proceed with RAI on the 25th or 26th. Would love some feedback from you on how you are doing now.
Thanks0 -
Today I am exactly 5 weekskb55 said:upcoming RAI
Hello Sandy. I am on day 14 of being off my synthroid, in prep for upcoming RAI treatment. I've been reading your posts and see that you did't seem to have experienced any major problems with the RAI. Just wanted to check to see how you have done post RAI & how you are doing now. I am scheduled for labs on the 22nd & if my TSH levels have reached 30, we plan to proceed with RAI on the 25th or 26th. Would love some feedback from you on how you are doing now.
Thanks
Today I am exactly 5 weeks post RAI and feeling good. I am taking 150 mcg of eltroxin.....and have not experienced any major side effects. After about a week, post RAI, I felt like I had an after taste in my mouth, but that didn't last.
As I've written in other posts, i do alot of sports, and for me thats the best indicator of how I'm doing. I am pretty much back to what I was doing pre TT, swimming, running, biking. I won't say that it feels exactly the same, but pretty close. This saturday I am running a 10K!
I think the hardest part is the Pre- RAI, I felt like a junky when I started the eltroxin! I am tired at night, but I'm back at work and doing everything!
Hope it goes easily for you, drink alot, suck on candies, read alot of good books and the week will be over before you know it.
Let me know how it goes.
Sandy
p.s I haven't been back to my endo yet, I will be seeing her in March.0 -
post RAIsandykr said:Today I am exactly 5 weeks
Today I am exactly 5 weeks post RAI and feeling good. I am taking 150 mcg of eltroxin.....and have not experienced any major side effects. After about a week, post RAI, I felt like I had an after taste in my mouth, but that didn't last.
As I've written in other posts, i do alot of sports, and for me thats the best indicator of how I'm doing. I am pretty much back to what I was doing pre TT, swimming, running, biking. I won't say that it feels exactly the same, but pretty close. This saturday I am running a 10K!
I think the hardest part is the Pre- RAI, I felt like a junky when I started the eltroxin! I am tired at night, but I'm back at work and doing everything!
Hope it goes easily for you, drink alot, suck on candies, read alot of good books and the week will be over before you know it.
Let me know how it goes.
Sandy
p.s I haven't been back to my endo yet, I will be seeing her in March.
I'm new at this & scrolled down as you suggested to read postings. Thank you for your update & like you, I don't seem to be experiencing any major symptoms with my rising TSH levels. I expect that to change any day now, but like you I'm trying to remain active, eating healthy, but I am following the low iodine diet, per my endo's instructions. Sounds as though your nausea wasn't too terribly bad, so I'm hoping to experience the same. I've stocked up on sugarless sour candies & chewing gum. Will also stock up on 7-up, just in case. I'm expecting to have the RAI on outpatient basis either Wed. or Thurs. of next week (25th or 26th), but that of course will depend upon the results of my TSH levels on Monday. I'll keep you posted & thanks again for your insight.
Kathy0 -
Hope it is not too difficultkb55 said:post RAI
I'm new at this & scrolled down as you suggested to read postings. Thank you for your update & like you, I don't seem to be experiencing any major symptoms with my rising TSH levels. I expect that to change any day now, but like you I'm trying to remain active, eating healthy, but I am following the low iodine diet, per my endo's instructions. Sounds as though your nausea wasn't too terribly bad, so I'm hoping to experience the same. I've stocked up on sugarless sour candies & chewing gum. Will also stock up on 7-up, just in case. I'm expecting to have the RAI on outpatient basis either Wed. or Thurs. of next week (25th or 26th), but that of course will depend upon the results of my TSH levels on Monday. I'll keep you posted & thanks again for your insight.
Kathy
Hope it is not too difficult for you. Just use the time for relaxing, reading, etc. Let me know how it goes
Sandy0
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