Questions regarding stage iv colon cancer and pain meds/steriods, ect
Dad is wanting to know if anyone of you feel good? Has anybody been thru chemo and got back to normal? He is basically on the couch 24/7 so just wanted to see what you thought. He is alittle down in the dumps. He just read a book today. He knew he was stage 4 but he didnt know there were only 4 stages. He is struggling with all this.
Comments
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Off the couch
First off, I would say he needs to get off the couch. Of course he's going to feel miserable if he's hanging around the couch. He needs to walk, to sit up, to do things. He's going to end up in a bit of a depression if he keeps laying around on the couch.
And as for pain pills, I'm not on any. I had some I took for 3 days after I got home from liver/colon/ureter resection, which was a 9 1/2 hours surgery, so that's why I took them, was a some pain from that, as for pain from my colon cancer and it's mets? No pain, no reason for pain pills. Some people here, have had surgeries that weren't great, that have lasting effects from the surgeries and some from pain from the Xeloda in their feet, so they do need pain medication. But as your onc said, the cancer doesn't cause the pain.
You really need to get him up and around I think, my opinion, time to stop feeling sorry for himself and start living a bit. This isn't THE death sentence, this is just a stinking, unanticipated piece of crap cancer putting a large bump in the road of life.
So you have choices, sit and look at the bump and don't do anything, get out and start climbing that large bump, get out your pick and shovel and start chipping at the bump so you can drive through.
And yes, I feel good, and yes I'm still on chemo.
My best to you both, just he needs to get back into life.
Winter Marie0 -
Pain and cancer
I'm not sure where your father is in his treatment. The only thing I've read is that he is Stage 4 and on chemo... and that he's in a lot of pain. He also seems to be on a lot of pain med (fentynol and Oxycotin) but you haven't said where the pain is or what is causing it. Did he have surgery? Is the pain from the surgical wound? Did the surgery involved cutting through muscle so it's muscle pain that he is feeling? If he had surgery and they took out the tumour that may or may not have been pressing on nerves, or had perforated through the intestine, then that pain would be gone now because there's no tumour left... just the healing of the surgical wound. Of course, with any kind of surgery, even major abdominal surgery, they have you up and walking by the day after surgery and before they release you from the hospital, you must be able to walk out on your own. The number 1 rule for almost any surgery known to mankind is to move, move move. It doesn't mean running marathons, or walking for miles a day, but get out of bed, get showered, get dressed, eat sensibly but make sure you eat. Go out for a walk, even just up and down the street. Get fresh air. Yes, these things may be boring and mundane but the fresh air and the movement of muscles will help with all levels of pain, if it is muscular pain we are talking about. I don't know how long he's been laying around on the couch but it only takes a couple of days of being in the same position and your muscles will start atrophying and yes, that causes pain.
Cancer does not cause pain. That is why they call Colon Cancer the "silent killer" because there are no symptoms to tell you you have it. Sometimes, when it gets really bad (this is how I found out), the tumour(s) that are growing in your intestines grow so big they either cause a blockage (very painful) or they perforate through the intestine causing and infection (peritonitis) in your abdomen. Both those examples will cause pain in your abdomen. When that happens, you don't have much time for surgery... you have to have it done immediately, or in the case of peritonitis, they have to clear up the infection before they can do surgery to remove the tumour... and that is dangerous on it's own. So while in the hospital waiting for surgery, yes, you could be in pain until the surgery is done. Then that pain disappears after the surgery... and then it's just the usual post-surgery recovery.
Yes, you will hear that some of us are on pain meds. For instance, I am on prescription Tylenol 3's with codeine and Oxycodone (as needed). I'm also on 150mg Lyrica twice/day. These meds are NOT because of the cancer. The T3s and Oxydocone are because of my arthritis, which I had pre-cancer, but the chemo has aggravated it. They Lyrica is for the neuropathy/nerve damage in my legs (below the knees) and both feet. Again, the cancer did not cause this and I have no cancer in my legs/feet/bones/joints. I have a pre-existing condition of arthritis which the chemo has aged it along and I have chemo related neuropathy/nerve damage. If a cancer goes into the bones and they can not remove it, then yes, that can be very painful... but I don't think your father has that, does he?
He should come on board hear and see just how many of us post, we all are going through some kind of similar chemo as he is and we all, for the most part are doing fine. I had a horrid time with one treatment so my onc changed it around and now I'm doing fine. I've lost my hair... big deal. I have 2 or 3 days every 2 weeks where I get hit with Chemo fatigue (I can almost pinpoint which days those will be), so I know I'm going to stay home, rest, read, watch tv and catch up on some computer work. The rest of the time, I'm out and about and causing trouble. Today is one of those chemo fatigue days. I've had a nap this afternoon but I'm about to go find an outfit to wear, put on my wig and makeup and I'm going out with friends to an opening night of a show at a local university. Looking forward to it... and that's what dad should be doing. Ok, not necessarily shows, but whatever he was interested in doing before, he should be out doing that now.... or he can change blankets on the couch and watch some more tv and wonder why he is getting stiffer and slower to move and so depressed because he can't move.
I hate to be a wet blanket, but you say he doesn't want to come here because he doesn't want to read anything but good stories. Hey, life isn't always good, but it isn't always bad either and this board is a good place to learn about living with cancer and see for himself there are lots of good stories as well as the sad stories. That is life... we don't live in a bubble. We have some extremely sad stories here that are hard to take, and then we have some incredibly successful stories that excite us to no end... and everything in between. But if dad doesn't want to come here, I get the feeling he also doesn't want to be told that he has to help himself and laying around all day isn't the answer.
Sorry to be a wet blanket... but we all have to work at this together!
Cheryl0 -
No surgery- Sorry I forgot to mention that.CherylHutch said:Pain and cancer
I'm not sure where your father is in his treatment. The only thing I've read is that he is Stage 4 and on chemo... and that he's in a lot of pain. He also seems to be on a lot of pain med (fentynol and Oxycotin) but you haven't said where the pain is or what is causing it. Did he have surgery? Is the pain from the surgical wound? Did the surgery involved cutting through muscle so it's muscle pain that he is feeling? If he had surgery and they took out the tumour that may or may not have been pressing on nerves, or had perforated through the intestine, then that pain would be gone now because there's no tumour left... just the healing of the surgical wound. Of course, with any kind of surgery, even major abdominal surgery, they have you up and walking by the day after surgery and before they release you from the hospital, you must be able to walk out on your own. The number 1 rule for almost any surgery known to mankind is to move, move move. It doesn't mean running marathons, or walking for miles a day, but get out of bed, get showered, get dressed, eat sensibly but make sure you eat. Go out for a walk, even just up and down the street. Get fresh air. Yes, these things may be boring and mundane but the fresh air and the movement of muscles will help with all levels of pain, if it is muscular pain we are talking about. I don't know how long he's been laying around on the couch but it only takes a couple of days of being in the same position and your muscles will start atrophying and yes, that causes pain.
Cancer does not cause pain. That is why they call Colon Cancer the "silent killer" because there are no symptoms to tell you you have it. Sometimes, when it gets really bad (this is how I found out), the tumour(s) that are growing in your intestines grow so big they either cause a blockage (very painful) or they perforate through the intestine causing and infection (peritonitis) in your abdomen. Both those examples will cause pain in your abdomen. When that happens, you don't have much time for surgery... you have to have it done immediately, or in the case of peritonitis, they have to clear up the infection before they can do surgery to remove the tumour... and that is dangerous on it's own. So while in the hospital waiting for surgery, yes, you could be in pain until the surgery is done. Then that pain disappears after the surgery... and then it's just the usual post-surgery recovery.
Yes, you will hear that some of us are on pain meds. For instance, I am on prescription Tylenol 3's with codeine and Oxycodone (as needed). I'm also on 150mg Lyrica twice/day. These meds are NOT because of the cancer. The T3s and Oxydocone are because of my arthritis, which I had pre-cancer, but the chemo has aggravated it. They Lyrica is for the neuropathy/nerve damage in my legs (below the knees) and both feet. Again, the cancer did not cause this and I have no cancer in my legs/feet/bones/joints. I have a pre-existing condition of arthritis which the chemo has aged it along and I have chemo related neuropathy/nerve damage. If a cancer goes into the bones and they can not remove it, then yes, that can be very painful... but I don't think your father has that, does he?
He should come on board hear and see just how many of us post, we all are going through some kind of similar chemo as he is and we all, for the most part are doing fine. I had a horrid time with one treatment so my onc changed it around and now I'm doing fine. I've lost my hair... big deal. I have 2 or 3 days every 2 weeks where I get hit with Chemo fatigue (I can almost pinpoint which days those will be), so I know I'm going to stay home, rest, read, watch tv and catch up on some computer work. The rest of the time, I'm out and about and causing trouble. Today is one of those chemo fatigue days. I've had a nap this afternoon but I'm about to go find an outfit to wear, put on my wig and makeup and I'm going out with friends to an opening night of a show at a local university. Looking forward to it... and that's what dad should be doing. Ok, not necessarily shows, but whatever he was interested in doing before, he should be out doing that now.... or he can change blankets on the couch and watch some more tv and wonder why he is getting stiffer and slower to move and so depressed because he can't move.
I hate to be a wet blanket, but you say he doesn't want to come here because he doesn't want to read anything but good stories. Hey, life isn't always good, but it isn't always bad either and this board is a good place to learn about living with cancer and see for himself there are lots of good stories as well as the sad stories. That is life... we don't live in a bubble. We have some extremely sad stories here that are hard to take, and then we have some incredibly successful stories that excite us to no end... and everything in between. But if dad doesn't want to come here, I get the feeling he also doesn't want to be told that he has to help himself and laying around all day isn't the answer.
Sorry to be a wet blanket... but we all have to work at this together!
Cheryl
His drs say he cannot have surgery because it has metastisized to the liver. They say surgery is not an option. He is 60 years old. He is getting severe pain in his lower side (cant remembler which one). The reason he doesnt get up and move is because when he does, like getting out and walking the dog or whatever, his pain gets much worse. He is not lazy or feeling sorry for himself just scared more than anything. Also after he gets out and does something he is worn out the next day and sleeps alot. He has no experience with cancer until this. He doesnt join the site because he also has a nuerological disease (pre cancer also) that causes his hands to shake uncontrollably. He has trouble typing or writing. He is also afraid to hear anything negative. So when he has concerns, I turn to you guys to try to help me answer his questions. He knew he was stage 4 but today reading liturature he found out that there are only 4 stages, he had no clue. I didnt realize he thought there are several stages. He was diagnosed in late October and started chemo in November. Again, he has a large colon tumor and mets to liver (sorry, I havent quite gotten the terminology down yet).
He also has a huge feeling or urge to have a BM all the time, even after he goes. He is going regularly so constipation is not a problem. That is also the reason he doesnt leave the house much! This is a man that has never had a health problem in his life before this. He has never been in the hospital, had a surgery or nothing so all of this is very new to him. He keeps hoping to wake up one day and feel "normal" again. He is in excellent shape otherwise. He has worked out his whole life, he is thin, ect. He is a good man and has sacraficed for his family his whole life and I really want to help him understand all this so all your help is appreciated. Right now his main concern is how to reduce pain, Im wondering if he doesnt have some sort of irritation, laseration, something in his colon or rectal area causing this.
Also, please give me advice about the steriods. Do you normally get them with any kind of chemo? What else do you know about them.
Id love to get him off the couch but he has to feel secure. He hasnt driven or gone out other than docs and chemo for a couple months.0 -
Hi
Perhaps your Dad needs to have the help of a mental health counselor who deals specifically with Cancer patients. He sounds like he needs some assistance getting his head around all this. I expect his doc could recommend someone. And tell Dad there is no shame in needing a helping hand to handle this.
Steroids have their own cummulative problems so they don't just give them without true reason. Lack of energy is not that.
We have all had periods of depression and likely will again and again. The thing about it is to recognize it for what it is, set a time limit to wallow in in, then get up and keep planning for the future.
Being stage 4 is not an immediate death sentence. We will all die of something one day, and it just might be crossing the street or driving the car. Stage 4 can be managed. There are folks here who are and are living a fairly good life managing it as a chronic disease.
Get Dad some help, so that he can help himself.
Marie who loves kitties0 -
Shaking handsr2424243 said:No surgery- Sorry I forgot to mention that.
His drs say he cannot have surgery because it has metastisized to the liver. They say surgery is not an option. He is 60 years old. He is getting severe pain in his lower side (cant remembler which one). The reason he doesnt get up and move is because when he does, like getting out and walking the dog or whatever, his pain gets much worse. He is not lazy or feeling sorry for himself just scared more than anything. Also after he gets out and does something he is worn out the next day and sleeps alot. He has no experience with cancer until this. He doesnt join the site because he also has a nuerological disease (pre cancer also) that causes his hands to shake uncontrollably. He has trouble typing or writing. He is also afraid to hear anything negative. So when he has concerns, I turn to you guys to try to help me answer his questions. He knew he was stage 4 but today reading liturature he found out that there are only 4 stages, he had no clue. I didnt realize he thought there are several stages. He was diagnosed in late October and started chemo in November. Again, he has a large colon tumor and mets to liver (sorry, I havent quite gotten the terminology down yet).
He also has a huge feeling or urge to have a BM all the time, even after he goes. He is going regularly so constipation is not a problem. That is also the reason he doesnt leave the house much! This is a man that has never had a health problem in his life before this. He has never been in the hospital, had a surgery or nothing so all of this is very new to him. He keeps hoping to wake up one day and feel "normal" again. He is in excellent shape otherwise. He has worked out his whole life, he is thin, ect. He is a good man and has sacraficed for his family his whole life and I really want to help him understand all this so all your help is appreciated. Right now his main concern is how to reduce pain, Im wondering if he doesnt have some sort of irritation, laseration, something in his colon or rectal area causing this.
Also, please give me advice about the steriods. Do you normally get them with any kind of chemo? What else do you know about them.
Id love to get him off the couch but he has to feel secure. He hasnt driven or gone out other than docs and chemo for a couple months.
My husband has "essential tremors", is your dad's essential tremors or Parkinson's?
He has to get off the couch. Sorry, the laying around isn't doing him one bit of good. If you keep laying around every time you manage to get up and do something, small, and you run back to the couch because you are tired and don't get back up again, you are just making yourself even more tired and tired. You may not think he's depressed, but perhaps you should suggest he get checked for it?
We're not putting him down, what we are doing is trying to let you know it isn't good to be laying around all day, especially for two months. Since he hasn't had surgery and he has colon with mets to liver which shouldn't be hurting at all (most of us here do or have had that)then the question is has he had a recent ct scan since the pain? If so what did the radiologist see? Anything to cause the pain?
Winter Marie0 -
Kim........He has to get out.....Lovekitties said:Hi
Perhaps your Dad needs to have the help of a mental health counselor who deals specifically with Cancer patients. He sounds like he needs some assistance getting his head around all this. I expect his doc could recommend someone. And tell Dad there is no shame in needing a helping hand to handle this.
Steroids have their own cummulative problems so they don't just give them without true reason. Lack of energy is not that.
We have all had periods of depression and likely will again and again. The thing about it is to recognize it for what it is, set a time limit to wallow in in, then get up and keep planning for the future.
Being stage 4 is not an immediate death sentence. We will all die of something one day, and it just might be crossing the street or driving the car. Stage 4 can be managed. There are folks here who are and are living a fairly good life managing it as a chronic disease.
Get Dad some help, so that he can help himself.
Marie who loves kitties
He sits on the couch, he will only get worse......The reason ? because all he is doing is thinking about his cancer. It has consumed him...you have to get him out...You know there is only 4 stages of cancer, and I went from what I thought was stage 1 to stage 4 in one trip to the surgeon, but as long as I don't go to stage 5 then all is fine....I feel good, although John Nimmons post was what no one wants to hear , we all have to learn to accept it for what it is...sad but sometimes a part of this journey. If he is trying to hide him self from negative then his every trip to the Dr will be horrendous...We have to face the large scale episodes we know come with this disease, but we take solace and try and enjoy the moments when we win, the smallest of victories are great leaps and bounds for actually all of us. We can't stick our heads in the sand, we face the giant, and ya know there's a lot of "Davids" out there among us......That's what we work towards, someday through a concerted effort and through sacrifice there will be a cure...I simply hope that I will be a part in that so that it not helps me, but assures me that my children will never go through what all of us here go through...Its time for you to be firm, let him know that the tumor will sometimes prompt the colon to think its a bowel movement coming on so his urge to poop is just that, an urge...just tell him not to fart in public..it may end up a shart...but tell him we have a lot of fun in here, we share the good and the bad, we have to , we're family, thats what family does. The two of you need to be aware that both of you are in this so you suffer as he does. Sometimes all someone needs is a little prompting maybe going to get a cup of coffee, or a bite to eat. Get him out of the house, it will be easier each time after he sees that there is a life with cancer.........Love to you both............buzz0 -
Hi
My husband James is post
Hi
My husband James is post surgery and wearing a 4.2mg patch - 25mcg an hour. It was some pain and discomfort that first alerted him to the presence of his cancer - so in his case there is some pain. But - and I know its really easy for me to say as Im not the one going through it - but I think a lot of it now (at least in James case) is stress and fear. His pain gets worse when he thinks too much about what is going on or when he experiences a setback. For example, he had no pain until he had a day without bowel movements - so he started thinking he had a bowel obstruction or his omentum was going hard etc etc - and you guessed it - pain. I think it is genuine pain stemming from the bodys way of dealing with what is going on.
I dont want to diminish what your Dad is going through in any way. If he says he is in pain, then he is - and believe me I know what you are going through - seeing your loved one in pain is just awful. But my thinking would be that he is already on pain meds and they arent working so its time to explore other options. The things that work for James are walking, deep breathing and chewing gum - so much the better if he can do all those at once! I know that the gum suggestion is a bit weird, but it has really worked.
Having said all of that though - my husband is post surgery from a bowel perforation and peritonitis. Now I dont want to send you running off thinking its that - but if the pain is only recent or is increasing - he needs to go see a Doc. James spent a day & night in extreme pain before he got a couple of scans which pointed to the peritonitis - but it would have been fatal if left for much longer. So if its been pain for a couple months - then its not it. But keep talking to his medical team - even if you ask them the same question 100 times - you need to satisfy yourselves that everything that can be done has been.
Make sure you get him consuming as much protein as he can - protein powder shakes are a really easy way. He has to get strength and energy back. Walking - even if its just around the house is important too. James has been cranking up his favourite music around the house (I really do not share his musical tastes!) along with a heap of his favourite movies, TV and video games. Could your Dad keep a journal? James has been getting some value from keeping a note of his symptoms & feelings. He is a pretty macho guy and an Engineer so its not a "Dear Diary" mushy thing - just dot points of his pain scores, nausea levels, mood and bowel movements etc. I think its a way to provide your Docs with information and to feel actively involved in what is going on.
With the steroids my husband gets some while he is having treatment - so during the infusion and tablets while wearing the bottle at home. We have found though that the steriods come with their own bunch of issues - hiccups, restlessness and edginess being the main ones. I first saw his reaction to the 'roids and wondered why he couldnt just take them the whole time. But the side effects arent great and now I wish he didnt have to take them at all.
In the end you know what - only real superheroes could deal with all of this without struggling at some point.0 -
You've got to get the guy
You've got to get the guy off the couch. I totally understand that often it's not about being lazy or unmotivated, it's about pain and the fear of increased pain. I dealt with that last year after surgery and I'm dealing with it now as a few of my tumors are big enough to push against intestines, nerves and what ever else. I just deal with it as long as I can; but sometimes I have to take oxycodone. I learned the hard way that fentynol doesn't work for me. I also got my hands on some really great refer and got stoned as a coot today. But don't tell anyone because I don't live in an MM state. It knocked out the pain, helped me get happy and gave me the munchies. Three great things.
I don't think steroids are prescribed to boost energy. I haven't heard of it anyway. I got steroids with Folfox and Folfori and with Emend (for barfing). No one's every told me how the steroids actually help, but they sure turned me into a **** and gave me a terrible back rash.
I just can't remember what normal felt like, but there are lots of times when I feel good.
Don't forget to take care of yourself too.
Roger0 -
I can only repeat what has been said but its importance is suchCrow71 said:You've got to get the guy
You've got to get the guy off the couch. I totally understand that often it's not about being lazy or unmotivated, it's about pain and the fear of increased pain. I dealt with that last year after surgery and I'm dealing with it now as a few of my tumors are big enough to push against intestines, nerves and what ever else. I just deal with it as long as I can; but sometimes I have to take oxycodone. I learned the hard way that fentynol doesn't work for me. I also got my hands on some really great refer and got stoned as a coot today. But don't tell anyone because I don't live in an MM state. It knocked out the pain, helped me get happy and gave me the munchies. Three great things.
I don't think steroids are prescribed to boost energy. I haven't heard of it anyway. I got steroids with Folfox and Folfori and with Emend (for barfing). No one's every told me how the steroids actually help, but they sure turned me into a **** and gave me a terrible back rash.
I just can't remember what normal felt like, but there are lots of times when I feel good.
Don't forget to take care of yourself too.
Roger
that it bears to be screamed at your father: GET OFF THE COUCH AND START WALKING!!!!!!
I thought my docs were crazy when they expected me to get out of bed when I awoke the next day from a colostomy...I did what they said but resisted every step of the way, thought they were trying to kill me, how was I to heal walking instead of lying in bed???? Well, tho your case is different than mine, unbearable pain is unbearable pain. I requested whatever it took to relieve the pain, which (in my case, again,different but read on)gradually subsided as did strength needed of med (this took quite some time)....But once home, I stayed in bed......About a month later I found this site and my first questions,actually pleas for help, dealt with living with a bag,the pain and being in bed all the time.....AND EVERYONE SAID_GET OUT OF BED AND START WALKING!!!!! And you know what? I did.This was Oct 2009, I was 59 years old,I got my stopwatch, got out of bed and was able to go about 20 seconds before I stopped and returned to bed.....But everytime I walked in my apartment, I timed it and wrote it down....And most times I increased the duration out of bed.....I also began to move around more (I stayed indoors except for chemo sessions,etc as Iwanted to avoid peope since my immune system was vulnerable-this was fall/winter time).Before I knew it I was easily walking for fifteen or more minutes at a time so to add a challenge, I added light ankle weights to each foot (and later on used light weights in hand as I walked).......All this just to reiterate what has been said:
Your father has to get himself up and walking, if not outdoors as the weather warms, at least in doors....If his diet needs improving, try adding nutrition drinks like Boost or Ensure or the CVS,etc brand tho clear it with onc. There is also no shame to seek the advice of a psychiatrist, psychologist, social worker or other assistance able to provide this type of help.I did that too. As long as your father is capable of moving--and many here,myself included,will testify that there are times during treatment when you are truly unable to move much--tell him that is what he MUST do for himself. He will also begin to feel much better the more active he becomes.....Please, don't let him wallow immobiized by his thoughts and fears..0 -
This comment has been removed by the ModeratorcoloCan said:I can only repeat what has been said but its importance is such
that it bears to be screamed at your father: GET OFF THE COUCH AND START WALKING!!!!!!
I thought my docs were crazy when they expected me to get out of bed when I awoke the next day from a colostomy...I did what they said but resisted every step of the way, thought they were trying to kill me, how was I to heal walking instead of lying in bed???? Well, tho your case is different than mine, unbearable pain is unbearable pain. I requested whatever it took to relieve the pain, which (in my case, again,different but read on)gradually subsided as did strength needed of med (this took quite some time)....But once home, I stayed in bed......About a month later I found this site and my first questions,actually pleas for help, dealt with living with a bag,the pain and being in bed all the time.....AND EVERYONE SAID_GET OUT OF BED AND START WALKING!!!!! And you know what? I did.This was Oct 2009, I was 59 years old,I got my stopwatch, got out of bed and was able to go about 20 seconds before I stopped and returned to bed.....But everytime I walked in my apartment, I timed it and wrote it down....And most times I increased the duration out of bed.....I also began to move around more (I stayed indoors except for chemo sessions,etc as Iwanted to avoid peope since my immune system was vulnerable-this was fall/winter time).Before I knew it I was easily walking for fifteen or more minutes at a time so to add a challenge, I added light ankle weights to each foot (and later on used light weights in hand as I walked).......All this just to reiterate what has been said:
Your father has to get himself up and walking, if not outdoors as the weather warms, at least in doors....If his diet needs improving, try adding nutrition drinks like Boost or Ensure or the CVS,etc brand tho clear it with onc. There is also no shame to seek the advice of a psychiatrist, psychologist, social worker or other assistance able to provide this type of help.I did that too. As long as your father is capable of moving--and many here,myself included,will testify that there are times during treatment when you are truly unable to move much--tell him that is what he MUST do for himself. He will also begin to feel much better the more active he becomes.....Please, don't let him wallow immobiized by his thoughts and fears..0
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