Extremely high calcium score at 42 - is there any positive here??

Posted by steveny @steveny, Jul 8, 2022

I'm a 42-year-old male. Exercise regularly, not overweight, non-smoker. While not overweight, I will say that my diet is crap -- way too much fast food, pizza etc. I guess I still eat like a high schooler.

Anyway, I saw a cardiologist figuring after age 40 this would be wise. He took bloodwork which was basically all fine. The cholesterol was *slightly* elevated and he recommended getting a heart calcium score. Told me he expected it would show nothing but that he just wanted to be thorough. Turns out the score came back at 397.

Obviously, this caught me totally flat-footed. I figured with my diet there might be some plaque, but this number places me in the 99.999th percentile for my age. And everything I have read online sound pretty dire about my long-term prognosis now -- that significant damage has been done, that it can't be reversed and can only get worse and that the statistical linkage between a number like this and heart attack-stroke is profound.

Weirdly, the cardiologist did not seem to be conveying any alarm when he told me the score, though. He was extremely matter of fact about it. Just said it was "very, very high" and that he would put me on a statin (which I've already started) and that I should take daily baby aspirin (doing that too). He said I should focus on improving diet and continue exercising (I already run 4-5x a week) but he was also pretty emphatic that "this must be genetic." (There is a history of heart problems on my father's side of the family -- though he is 76 and has yet to have any heart trouble himself.)

This was all a lot to get hit with at once. From the doctor's casual, matter of fact tone, I left the office a little confused, wondering if maybe this score wasn't that big of a deal and was a very manageable thing. Why else would the doctor not seem that disturbed by it? But then I started reading everything I could find on the subject and it's been pretty devastating.

Obviously, I'm ready, willing and able to implement the dietary changes, but for the score to be this bad at this young of an age (and with no smoking history, not being overweight, and doing regular exercise), it seems like I'm in serious trouble here. So upsetting to read that I can't bring this number down.

I guess I'm just posting this in the hopes that others here might have some experience and insight and be able to offer something, anything that is encouraging? When I read all of the medical material online about high CAC scores, am I missing something? This has all been playing out over the last 24 hours and I feel like I've basically just found out that I could drop dead of a heart attack at any moment and that my life expectancy has been drastically reduced with this news -- and that there's no way to get it back to normal. I now have a million questions for the cardiologist, but when I called his office today I was told he's just started his vacation and won't be back until August.

Any encouragement or practical advice would be greatly appreciated. Thanks.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

anyone able to get brand Lipitor? just got on medicare and last year on BCBC, after 20 years of brand Lipitor, it is no longer covered. So brand Lipitor is $1900 for 90 tablets in USA.
Problem is generics
1. Generics aren't tested for the most part by FDA (they don't have the budget or capacity).
2. most generics, and yes atvorstatins, are made overseas (India/China) and firms are permitted to put in any fillers/buffers/agents they want. As one Indian pharmacist said in an interview, "Americas expect their drugs to be safe - we don't have that expectation in India".
3. Every generic producer chases the cheapest ingredients - period.
4. The US military is worried about generics it's soldiers are taking. Now most Americans know the military can care less about their troops but the fact they are worried about generics should raise a red flag for every American. When you combine reports from Bloomberg/BusinessWeek and the military (and others) - this isn't extremist reporting - rather mainstream.

I used to get Lipitor for $90/90 pills. I don't trust the fillers/buffers or lack of testing of generics.
Does anyone know how to get the brand name Lipitor for a reasonable price?

Generic Drugs Aren’t Always All They’re Cracked Up to Be
https://www.bloomberg.com/news/newsletters/2023-06-13/generic-drugs-aren-t-always-all-they-re-cracked-up-to-be
The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is In Its Way.
The US drug-safety regulator has resisted independent testing that’s widely used in Europe.
https://www.bloomberg.com/news/features/2023-12-05/pentagon-is-skeptical-of-cheap-generic-drugs-approved-by-the-fda?embedded-checkout=true

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At least you know about it early. Not much comfort I realize, but meds can help manage it.

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I had a calcium score of 535, 15 years ago. It is now 2235. I had two stents in 2022. I couldn't tolerate statins so about 5 years ago went on Pralulent, injectable cholesterol reduction med and it was very effective in bringing my cholesterol level down. I am absolutely sure this is a genetic condition and all I can do is my best in diet and exercise and hope for a long life. I'm 78 and would love to see another 10 years of good health. Stents are expected to be good for about 10 years and after that I would need by-pass surgery which if I were 88 I would probably reject and just take my chances of a quick end. I am trying to get all my affairs in order because at 78, there can not be much expectation of many more years.

Medical science is making huge inroads in issues dealing with cardiac health so who knows what "magic" will be coming down the line. I wouldn't be surprised if a medication were to become available to dissolve plaque already existing in our arteries.

And in the meantime, we continue to exercise, eat a healthy diet and take our meds.

Donna

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@steveny

So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.

Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.

This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.

But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.

Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.

I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.

I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.

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How did your diet change before your test with improved results vs. your tests with results that went in the wrong direction?

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I’ve said this several times here. I was very similar to you and upset at the lack of urgency by my cardiologist. I got a new one who put me on Repatha, an injectible (Praluent is much the same). Today my LDL which is the key, is 25. You’ve got to take an injectible cholesterol lowering drug ….you’ll feel much better mentally. I also took up swimming 3x a week and am trying to eat better but that’s always tough.

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@steveny

**That should say a 23% increase in my coronary plaque -- from 245 mm3 to 317 mm3. In the span of 16 months while taking a statin and fenofibrate, crushing LDL under 50, keeping all excess weight off, exercising regularly, and improving diet/incorporating Mediterranean principles.

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Thanks for posting this thread and updating it.

I hesitate to offer anything because you are seeing such high profile physicians. (How are you able to get appointments?). Yet I have been working with a cardiac dietitian and a couple of things caught my eye. You say you have lost weight, but is it in the normal range? Are you below the 40” circumference for men? Have you checked your nitric oxide levels? Did you have insulin levels tested or only blood glucose?

As I said, I am sure this has all been addressed. I feel your pain and hope you are able to figure this out. Hang in there. Keep us posted.

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@steveny

So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.

Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.

This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.

But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.

Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.

I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.

I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.

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Hi @steveny

Sorry to hear about your challenges---Hopefully the new year will bring much better news. It sounds like you are doing everything possible. What did the Cleerly test show is your new CAC? You said it shifted to more of a 50/50. Seeing Dr. A--is he a proponent of repeating Calcium scores? I work in the medical field and yes within Radiology that offers many of these cardiac imaging studies. Interestingly my IVY League Interventional Cardiology group I go to...are not big fans of Calcium Scoring. He is also not rushing people off to a Cath Lab in his own words especially without symptoms. The best of luck to you and hope to hear positive updates from you. This forum is great to decompress and learn of other experiences. I had a CAC done 2 years ago with a score of 171---no symptoms, full workup CT, Nuclear etc. and am fortunate I am clear---but realize I have disease. Did your physician indicate if you have any blockages?

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@steveny

So I haven't been here in a long time, but I started this thread originally in the summer of 22 when, at age 42, I learned that my calcium score was 397. I figured I'd update my situation for anyone curious/who stumbles on this at some point.

Basically: I had a very rough summer and fall in '22, losing myself in endless internet research, consultation with specialists, reading all of the compelling/contradictory diet advice from experts, having tests and scans done, etc. Eventually, I realized that the man who invented the calcium score, Dr. Arthur Agatston, is still in practice. So I became his patient.

This was almost exactly a year ago, and when I did, I calmed down fairly quickly. This was because I was very confident in him and he was up to speed on all of the latest research, testing and imaging and puts it to use in his practice. In short, he did advanced bloodwork that looked not just at my basic lipid profile, but at cholesterol particle size, "pre-pre-diabetes," and other things I have since learned a lot about. I also had a Cleerly scan done, and he works closely with them so he's as knowledgeable as anyone can be when it comes to interpreting results. What he found was encouraging: The Cleerly scan (as I think I mentioned in some earlier post here) showed 2/3 of my plaque was already calcified, and the other 1/3 was considered non-calcified -- and, crucially, that *none* was low-density/soft plaque, the least stable kind and the type most likely to cause a rupture and clot. And the bloodwork looked terrific. Low LDL particle count, very low small particle count, etc. And no diabetes, pre-diabetes or "pre-pre-diabetes." (I had taken a blood test in the fall of '22 that showed a high glucose number, but it proved to be a one-off and was probably the result of having eaten something too rich the night before). So Dr. A. felt that I had a fairly stable situation -- one that would only improve as I spent more time on the statin (I'd already gotten LDL to 51) , continued to improve diet and maintain weight loss (I've lost and kept 35 pounds off since this started and am at a weight I haven't seen in years), and took one more drug known to arrest plaque formation and stabilize existing plaque: Fenofibrate. This was December '22 and I left feeling very upbeat for the first time, and stayed that way for months to come, believing we actually did have a handle on this.

But then came the 6-month follow-up bloodowork. The basic lipid profile was still great -- LDL now under 50, HDL 85, low triglycerides, no elevated CRP or lp(a). But literally every metric on the particle test had moved in the wrong direction. Dr. A. admitted he was stumped. This wasn't supposed to happen given where my baseline had been and the treatment I was on. He raised a few possibilities but basically ended up encouraging me to focus on cutting out carbs as much as possible and to do a re-test and a new Cleerly scan in another 6 months.

Which brings me to this week. I had the Cleerly scan done again this week. And somehow, I have seen a 17% increase in my plaque volume. This was not supposed to happen. More worryingly, the balance between calcified and non-calcified has shifted; it is now close to 50/50. The idea was that with my treatment, I would dramatically slow the formation of any new plaques and that the existing plaques would simply calcify more and become more stable. Instead, I have developed new plaques and a significant new amount of non-calcified plaque. So the atherosclerotic process that we thought/hoped might have been more active in the past is still very active -- maybe even *more* active than a year ago. But how? Study after study after study says that I am doing and taking the right things to stabilize and improve this situation. The statin is supposed to shifty plaques from non-calcified to calcified. So is the fenofibrate. Taking all that weight off, especially around my belly, was supposed to be a huge boost. But even though my basic lipid profile looks better than ever -- LDL is now just 43 -- I am gaining plaque rapidly and it is spreading to new areas of my arterial tree.

I am supposed to speak with the Dr. soon -- can't come soon enough as far as I'm concerned. But I'm obviously quite discouraged as I write this. If you read this thread, you'll see that my extremely high initial CAC score was a mystery to just about everyone, and it's even more of a mystery how my plaque situation could be de-stabilizing and worsening under this kind of treatment and with these lifestyle changes.

I am hoping there is some root explanation that can be discovered here, but nothing in my conversations yet with the Dr. suggests he has many ideas beyond this approach. At worst, it was supposed to leave me in the same situation I was in a year ago and basically have no effect, positive or negative. But his experience and all available research, he said, suggested my situation would only improve. Instead, it's worsened. Which is very upsetting, obviously, and only amplified by the fact that it doesn't seem to make any sense.

Jump to this post

Sorry to hear. I have gone between keto and low-fat plant based diets and not much changes. I have a high lp(a) and trying to do what I can to lower everything. Your ldl is great so that is something to celebrate. I took a MTHFR test and have one issue with my MTHFR C677T gene. Recommendation is to do nothing. The answers are not all in, we can just do our best with the current knowledge in front of us. Nice to see what people are doing here in case we are missing any possible treatments, etc. Thank you for sharing.

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@questionofbalance

anyone able to get brand Lipitor? just got on medicare and last year on BCBC, after 20 years of brand Lipitor, it is no longer covered. So brand Lipitor is $1900 for 90 tablets in USA.
Problem is generics
1. Generics aren't tested for the most part by FDA (they don't have the budget or capacity).
2. most generics, and yes atvorstatins, are made overseas (India/China) and firms are permitted to put in any fillers/buffers/agents they want. As one Indian pharmacist said in an interview, "Americas expect their drugs to be safe - we don't have that expectation in India".
3. Every generic producer chases the cheapest ingredients - period.
4. The US military is worried about generics it's soldiers are taking. Now most Americans know the military can care less about their troops but the fact they are worried about generics should raise a red flag for every American. When you combine reports from Bloomberg/BusinessWeek and the military (and others) - this isn't extremist reporting - rather mainstream.

I used to get Lipitor for $90/90 pills. I don't trust the fillers/buffers or lack of testing of generics.
Does anyone know how to get the brand name Lipitor for a reasonable price?

Generic Drugs Aren’t Always All They’re Cracked Up to Be
https://www.bloomberg.com/news/newsletters/2023-06-13/generic-drugs-aren-t-always-all-they-re-cracked-up-to-be
The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is In Its Way.
The US drug-safety regulator has resisted independent testing that’s widely used in Europe.
https://www.bloomberg.com/news/features/2023-12-05/pentagon-is-skeptical-of-cheap-generic-drugs-approved-by-the-fda?embedded-checkout=true

Jump to this post

Thanks for the facts on generics. It's an issue I have been concerned about for years. Your comments are far more detailed than different facts I uncovered. The internet often says these drugs are the same .. it's my understanding that the generics are required to have the primary ingredient aside from that it's a dice roll. I am taking one in which there is no question they are not the same. When I could get the name brand the results were amazing ... there are some positives with the generic but slower acting and not the the same. When the brand was approved by the insurance I had through my employer the cost was reasonable. When only generics were approved -- cost was even less but Walgreens made a mistake and gave me the name brand; however it was at full price --- was to be taken daily but I was given what they had in stock only 15 for $500. It was worth every dime. Walgreens also said they could no longer get the Rx even if I wanted to pay full price. (Both Walgreens and CVS). After a couple of years being married to Mr. Generic I decided to consider a divorce. I took the proverbial bull by the proverbial horns and called the manufacturer of the name brand. I was ready to pay full price no matter what. First-- it was tough to find the telephone number then to find someone to discuss this. My question was; "does any drug store in the US carry the Rx?" "and if not can they get it?". Answer was "yes". Next question was: "can you tell me where I can get it?". My MD was willing to give me a prescription -- the answer from the manufacturer was : " we cannot do that" .

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@joaf37

Thanks for the facts on generics. It's an issue I have been concerned about for years. Your comments are far more detailed than different facts I uncovered. The internet often says these drugs are the same .. it's my understanding that the generics are required to have the primary ingredient aside from that it's a dice roll. I am taking one in which there is no question they are not the same. When I could get the name brand the results were amazing ... there are some positives with the generic but slower acting and not the the same. When the brand was approved by the insurance I had through my employer the cost was reasonable. When only generics were approved -- cost was even less but Walgreens made a mistake and gave me the name brand; however it was at full price --- was to be taken daily but I was given what they had in stock only 15 for $500. It was worth every dime. Walgreens also said they could no longer get the Rx even if I wanted to pay full price. (Both Walgreens and CVS). After a couple of years being married to Mr. Generic I decided to consider a divorce. I took the proverbial bull by the proverbial horns and called the manufacturer of the name brand. I was ready to pay full price no matter what. First-- it was tough to find the telephone number then to find someone to discuss this. My question was; "does any drug store in the US carry the Rx?" "and if not can they get it?". Answer was "yes". Next question was: "can you tell me where I can get it?". My MD was willing to give me a prescription -- the answer from the manufacturer was : " we cannot do that" .

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which drug? I've been doing the same with brand Lipitor. It appears perhaps they will pay in 2024 according to, now on, Medicare. I will find out if Part D shows the drug and price then I can buy it at that price.
Generics are permitted to use any fillers/buffers/additives they wish. Most ingredients come from China and India. Zero regulation or testing. Plenty are articles on the subject in BusinessWeek/Bloomberg and WaPro.

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