Adding chemo to prescribed radiaiton following neck dissection
Comments
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Unusual analysis
Hi UMV,
While I am no expert in this, it would seem very unusual for superficial SCC from your forehead would metastasize. While SCC are more agressive cnacer than BCC, in skin Cancers they normallly invade local tissue and need to be very advanced before they metastasize.
Did they say you have an unknown primary ???
What did you PET/CT Scan show - assuming you had had one done ??
They would normally give you radiation (preferably IMRT) when they know exactly where to hit, while the Chemo would be used as a back up in the case they are unsure of any other areas that are affected. If the surgery remove all the cancer, then in theory, you shouldn't need either.
Radiation is like a huge 'fly swat' that hits something and kills it. Chemo is like 'fly spray' that fills the room, supposedly killing anything in the room. Just how many flies you have and where they are is the million dollar question.
I had SCC of the tonsil with 2 nodes showing light uptake from the PET/CT, less than a clear indication of cancer but enough to indicate inflammation, so they think the nodes were processing dead cancer cells. I had the surgery to remove the tumor in the tonsil area and 2 or my 3 Doctors said IMRT would be sufficient while 1 of the 3 (the Chemo Doctor) said I should also have Chemo to be sure. It was a difficult choice for me as you are now faced with the same thing. My ENT said due to the location of the tumor, he could not get 'clear margins' which mean 10mm, even though he thought he got it all. As such, he recommended we run with a course of the IMRT.
At the time, I had to make a choice and I opted for the surgery and thyn IMRT and the Chemo. The Chemo they used was Erbitux which is called a Target Therapy and it is not as heavy as many of the other Chemo drugs. I cannot claim it worked or I am better for it but I got through and am now doing well. I feel the Radiation did more damage to me than the Chemo but none of us can prove that. The side effects from Erbitux is a nasty rash for a few weeks. If I had to make the same decision again today, I would be as confused. I chose to hit it with everything.
I also have chosen to change my diet and lifestyle dramatically and so to find the exact reason for my now good health is hard to pinpoint, but my gut feeling is that careful nutrition has been the most important part of my recovery. See my Expression page for more detail.
I am sorry I have no clear answers but here you have my story and what I did.
Regds
Scam0 -
Extra capsular spreadScambuster said:Unusual analysis
Hi UMV,
While I am no expert in this, it would seem very unusual for superficial SCC from your forehead would metastasize. While SCC are more agressive cnacer than BCC, in skin Cancers they normallly invade local tissue and need to be very advanced before they metastasize.
Did they say you have an unknown primary ???
What did you PET/CT Scan show - assuming you had had one done ??
They would normally give you radiation (preferably IMRT) when they know exactly where to hit, while the Chemo would be used as a back up in the case they are unsure of any other areas that are affected. If the surgery remove all the cancer, then in theory, you shouldn't need either.
Radiation is like a huge 'fly swat' that hits something and kills it. Chemo is like 'fly spray' that fills the room, supposedly killing anything in the room. Just how many flies you have and where they are is the million dollar question.
I had SCC of the tonsil with 2 nodes showing light uptake from the PET/CT, less than a clear indication of cancer but enough to indicate inflammation, so they think the nodes were processing dead cancer cells. I had the surgery to remove the tumor in the tonsil area and 2 or my 3 Doctors said IMRT would be sufficient while 1 of the 3 (the Chemo Doctor) said I should also have Chemo to be sure. It was a difficult choice for me as you are now faced with the same thing. My ENT said due to the location of the tumor, he could not get 'clear margins' which mean 10mm, even though he thought he got it all. As such, he recommended we run with a course of the IMRT.
At the time, I had to make a choice and I opted for the surgery and thyn IMRT and the Chemo. The Chemo they used was Erbitux which is called a Target Therapy and it is not as heavy as many of the other Chemo drugs. I cannot claim it worked or I am better for it but I got through and am now doing well. I feel the Radiation did more damage to me than the Chemo but none of us can prove that. The side effects from Erbitux is a nasty rash for a few weeks. If I had to make the same decision again today, I would be as confused. I chose to hit it with everything.
I also have chosen to change my diet and lifestyle dramatically and so to find the exact reason for my now good health is hard to pinpoint, but my gut feeling is that careful nutrition has been the most important part of my recovery. See my Expression page for more detail.
I am sorry I have no clear answers but here you have my story and what I did.
Regds
Scam
These words would tell me to do the chemo in addition to the radiation. My partner, Mark, was diagnosed with SCC left tonsil in April. In May he had a radical neck disection. The surgeon had to do the radical instead of the modified/selective because of extra capsular spread to his neck muscle. He had the option of not doing chemo (not strongly recommended) but decided to throw the book at it. I must say, as he is done with treatment and recovering very well, it is the extra capsular spread to his neck that haunts me and can keep me awake at night.
My thoughts: "Throw the Book"!
Welcome to our boards, and very sorry you find yourself here.
Kim0 -
UVM,Kimba1505 said:Extra capsular spread
These words would tell me to do the chemo in addition to the radiation. My partner, Mark, was diagnosed with SCC left tonsil in April. In May he had a radical neck disection. The surgeon had to do the radical instead of the modified/selective because of extra capsular spread to his neck muscle. He had the option of not doing chemo (not strongly recommended) but decided to throw the book at it. I must say, as he is done with treatment and recovering very well, it is the extra capsular spread to his neck that haunts me and can keep me awake at night.
My thoughts: "Throw the Book"!
Welcome to our boards, and very sorry you find yourself here.
Kim
I am currently
UVM,
I am currently recovering from neck disection and removal of both tonsils, with 33 round of unilatteral rad starting middle of sept. I have elected no chemo. It took me three RO to feel comfortable with treatment options. The first one said rad/chemo, maybe surg. I dont think she even knew anything about me. It seem to me she opened her medical textbook and look up head and neck cancer. I felt like I was another lab rat in her office. The 2nd RO was very knowledgeable and like to toot his horn. I was ok with that as long as he was as good as he said he was. I could not prove it either way. His treatment option was also rad/chemo, but when I said I didnt like his options, he said forgot the chemo and just let me do the rads. This sent up a red flag. Finally the third and current RO listed to my concerns. I told him that I was looking for quality of life, and not quantity of life. I was not afraid of dying, but I was afraid of breathing but not living. We talked about many options and what each option offered and what the trade off were. In the end, because the cancer is on the left side (result of pet scan) we have agreed to do unilatteral radiation with no chemo. I traded about 10% for bilatterial and 10 for chemo%. The trade off made since to me since the return is reduced short/long term side effects and a more rapid recovery. My concern was not to be over radiaed, which some of this site are and have to deal with that outcome every day of their life. Interesting fact is that Canada and Europe practice unilatterial rad regulary for cancer to just one side. Only the US says it is not the best portacal for patients. Makes me belive the pharmacituls are behind this bizzare statement. I also beleive that with life style, and diet change, I can recover the 20% I traded for. The main thing is to make sure you doctors are listening to you. This is your body and you are the only one that have to live or die with the decissions you make. Educate youself and make the right decision for yourself.0 -
Radiation and Chemo Here
Hi UVM, I was diagnosed with base of tongue SCC stage 4 and had a ND to remove 3 nodes. I also had the choice of radiation alone or in combination with chemo (cistplatin). It was explained to me going the rad/chemo combination route would increase the chances of being 'cured' by 10-15% over the radiation alone. For myself, I didn't think twice and opted for the radiation and chemo. If it will increase my chance of survival, I'm all for it. I am one of the more fortunate ones in that treatment wasn't particularly bad for me. I am 4-1/2 weeks out from treatment now and feeling better with each passing week. Having been through it once, I would make the same decision again. Cheers
Jimbo0 -
will probably do radiation and chemo tooJimbo55 said:Radiation and Chemo Here
Hi UVM, I was diagnosed with base of tongue SCC stage 4 and had a ND to remove 3 nodes. I also had the choice of radiation alone or in combination with chemo (cistplatin). It was explained to me going the rad/chemo combination route would increase the chances of being 'cured' by 10-15% over the radiation alone. For myself, I didn't think twice and opted for the radiation and chemo. If it will increase my chance of survival, I'm all for it. I am one of the more fortunate ones in that treatment wasn't particularly bad for me. I am 4-1/2 weeks out from treatment now and feeling better with each passing week. Having been through it once, I would make the same decision again. Cheers
Jimbo
Hi,
This is my first post, so bare with me.
My husband was diagnosed with SCC in 6/7 lymph nodes in his neck at the end of July. At the time it was primary unknown. He had his tonsils removed on 8/27 and the ENT found a small (< 2 cm) tumor on the left tonsil as well as suspicous 2 other lymph nodes (left tonsil and lymph nodes lit up on the petscan).
We will probably be following the rad/chemo combination, since that is what the ENT at Slone Kettering is recommending, and I read also on the web, it increases chances of cure. My husband has been a strict vegan (very healthy one) for the past few years and never was a smoker and only a light drinker when he was younger, so we are crossing fingers that all of that will help us get through this ok. (It is not 100% confirmed yet to us, but he probably got the SCC from HPV.)
I am posting this, not so much as to provide any more insight (since at this point I really don't have any), but to say mostly how much I appreciate this discussion board and all of the informative and encouraging posts.
When we start the chemo/rad treatments (probably later in Sept.), I will probably post more to get more input since I know that's when I'll need it the most.
Thanks very much.
Suzanne0 -
Welcome Aboardsusan0803 said:will probably do radiation and chemo too
Hi,
This is my first post, so bare with me.
My husband was diagnosed with SCC in 6/7 lymph nodes in his neck at the end of July. At the time it was primary unknown. He had his tonsils removed on 8/27 and the ENT found a small (< 2 cm) tumor on the left tonsil as well as suspicous 2 other lymph nodes (left tonsil and lymph nodes lit up on the petscan).
We will probably be following the rad/chemo combination, since that is what the ENT at Slone Kettering is recommending, and I read also on the web, it increases chances of cure. My husband has been a strict vegan (very healthy one) for the past few years and never was a smoker and only a light drinker when he was younger, so we are crossing fingers that all of that will help us get through this ok. (It is not 100% confirmed yet to us, but he probably got the SCC from HPV.)
I am posting this, not so much as to provide any more insight (since at this point I really don't have any), but to say mostly how much I appreciate this discussion board and all of the informative and encouraging posts.
When we start the chemo/rad treatments (probably later in Sept.), I will probably post more to get more input since I know that's when I'll need it the most.
Thanks very much.
Suzanne
Welcome to the H&N Family Suzanne and your husband and family as well. Sorry for the diagnosis, but you wouldn't be here if it wasn't in the grand plan.
We have a large knowledge base, history, experience, care givers, and current/previous patients.
Feel free to particpate and communictae at any time, there's usually someone on here at most anytime day or night...
Best to you and your husband,
John0 -
Hi SuzanneSkiffin16 said:Welcome Aboard
Welcome to the H&N Family Suzanne and your husband and family as well. Sorry for the diagnosis, but you wouldn't be here if it wasn't in the grand plan.
We have a large knowledge base, history, experience, care givers, and current/previous patients.
Feel free to particpate and communictae at any time, there's usually someone on here at most anytime day or night...
Best to you and your husband,
John
Just to second what John said, welcome to our family here on CSN0 -
Options
I find it concerning that they are not committed to doing one or the other. I would ask them to get together and decide.
The radiation is the work horse in killing the cancer. In my opinion adding chemo to the radiation is that the radiation then will give more bang for the buck. If your going to do the radiation I personally would add the chemo.
Has your case gone thru a tumor board or is this being handled by one doctor?
Please inform us on what the decision is.0 -
Erbitux and Radiation
Hi uvm1978, I was diagnosed with SCC 4 months ago after a golf ball size knot came up on my neck. They did a radical left neck disection with 23 nodes being remove and 3 being positive. Two weeks after surgery they wanted me to do rads plus chemo and I had to research the chemo before I could make a decision.
Cisplatin with rad gives you 8 more percent chance for the cancer not to return in 5 years but more toxicity than Erbitux which I opt for. Erbitux is a man made from a rat gene and gives you an extra 5% chance not to return in 5 years but 2% of the patients have a chance of death on thier first dose.
I am not sure how things are turning out for me because I am 5 weeks out from my last rad and have had not pats or cs's. I hope this helps you a little and I do believe the chemo with rads will give you a better percentage of the cancer not developing in 5 years. I hope thing go good for you and if I can help with anything let me know.
God bless all of you!!!0 -
WelcomeD-Byrd said:Erbitux and Radiation
Hi uvm1978, I was diagnosed with SCC 4 months ago after a golf ball size knot came up on my neck. They did a radical left neck disection with 23 nodes being remove and 3 being positive. Two weeks after surgery they wanted me to do rads plus chemo and I had to research the chemo before I could make a decision.
Cisplatin with rad gives you 8 more percent chance for the cancer not to return in 5 years but more toxicity than Erbitux which I opt for. Erbitux is a man made from a rat gene and gives you an extra 5% chance not to return in 5 years but 2% of the patients have a chance of death on thier first dose.
I am not sure how things are turning out for me because I am 5 weeks out from my last rad and have had not pats or cs's. I hope this helps you a little and I do believe the chemo with rads will give you a better percentage of the cancer not developing in 5 years. I hope thing go good for you and if I can help with anything let me know.
God bless all of you!!!
Suzanne,
Yes, welcome here and please post with any questions you may have.
Best,
Steve0 -
ADDING TREATMENTS
Welcome to the group.
I am about 4 weeks post surgery and my final treatment plan is not what we originally had planned. First off my one day surgery for the tonsilectomy and neck dissection turned into two seperate surgeries. This was aggravating but my Surgeon was able to get clean margins and most importantly taking the extra time allowed for him to only extract effected tissues without having to take muscles, nerves veins ETC.
After the surgery and final path reports, it was determined due to the aggressive nature of the cancer and how it was embedded into my tissue that he now recommened to do Chemo and to now also radiate both sides of my neck. My decision was to throw everything we could at it now. The side effects for me will be more severe, but long term I will have some peace of mind that this will take care of it once and for all.
How is your health and physical status right now? I am very active and am a powerlifter so I am in good shape and can afford to drop some LBS without comprimising my overall health.
If you are comfortable with the mindset of taking the worst pain all in one dose and be done with it, then I think an all out attack is the right thing to do.
Best of luck, you will get through this.
Mike0 -
HPV+luv4lacrosse said:ADDING TREATMENTS
Welcome to the group.
I am about 4 weeks post surgery and my final treatment plan is not what we originally had planned. First off my one day surgery for the tonsilectomy and neck dissection turned into two seperate surgeries. This was aggravating but my Surgeon was able to get clean margins and most importantly taking the extra time allowed for him to only extract effected tissues without having to take muscles, nerves veins ETC.
After the surgery and final path reports, it was determined due to the aggressive nature of the cancer and how it was embedded into my tissue that he now recommened to do Chemo and to now also radiate both sides of my neck. My decision was to throw everything we could at it now. The side effects for me will be more severe, but long term I will have some peace of mind that this will take care of it once and for all.
How is your health and physical status right now? I am very active and am a powerlifter so I am in good shape and can afford to drop some LBS without comprimising my overall health.
If you are comfortable with the mindset of taking the worst pain all in one dose and be done with it, then I think an all out attack is the right thing to do.
Best of luck, you will get through this.
Mike
My wife had 16 lymph nodes removed from her neck by surgery, and 3 of them were malignant, at the end April 2010. After the initial biopsy and much internet research we pushed the oncologist to do a HPV test on the biopsy sample. At this stage the surgeon was recommending radiotherapy and erbitux. Then we went to see the radiotherapist and he initially thought to use cisplatin with radiotherapy but after the HPV diagnosis he said that he would do just radiation. We were relieved and only time will tell if it was the correct decision. I have to say the biopsy found no extra capsular spread so that was also in our favour. The literature suggests that HPV+ tumours respond very well to radiation alone.
She then had 29 radiotherapy sessions and after 7 weeks is feeling much better.0 -
No surgery
I did not have surgery. I was not given a choice whether I wanted the chemo or not. I had scc of the hypophyrnax with lymph node involvement. (The node was large). I went through 35 radiation treatments and 3 rounds of citsplatin. At 7 weeks I was told I was clean. At 3 months I am back to work. I no longer use the feeding tube and some taste is coming back. The bad memories of being so ill on the citsplatin are fading.
I have no regrets.0 -
Hit It Hard with Everything They've GotJUDYV5 said:No surgery
I did not have surgery. I was not given a choice whether I wanted the chemo or not. I had scc of the hypophyrnax with lymph node involvement. (The node was large). I went through 35 radiation treatments and 3 rounds of citsplatin. At 7 weeks I was told I was clean. At 3 months I am back to work. I no longer use the feeding tube and some taste is coming back. The bad memories of being so ill on the citsplatin are fading.
I have no regrets.
My husband had rads/chemo and is now having recurrence. Let them give it everything they can.... there are no guarantees and recurrence is awful.0 -
Radiation & Chemo here alsokimmygarland said:Hit It Hard with Everything They've Got
My husband had rads/chemo and is now having recurrence. Let them give it everything they can.... there are no guarantees and recurrence is awful.
UMV
I had a somewhat diiferent form of treatment than some here. Mine was 8 weeks of induction chemo with carboplatin taxol & erbitux. Then my radiation was concurrent(at the same time) with chemo(5FU,hydroxyurea & erbitux) radiation was twice daily for 5 alternating weeks.
I also say throw the book at it. My 9 month scan was clean with NED.
UMV was your priamry skin cancer? I had a friend that had cancer on his scalp that spread to his lymp nodes as well.
Best Wishes & Prayers on whichever decision you make
Dave0 -
UVM and SuzanneFire34 said:Radiation & Chemo here also
UMV
I had a somewhat diiferent form of treatment than some here. Mine was 8 weeks of induction chemo with carboplatin taxol & erbitux. Then my radiation was concurrent(at the same time) with chemo(5FU,hydroxyurea & erbitux) radiation was twice daily for 5 alternating weeks.
I also say throw the book at it. My 9 month scan was clean with NED.
UMV was your priamry skin cancer? I had a friend that had cancer on his scalp that spread to his lymp nodes as well.
Best Wishes & Prayers on whichever decision you make
Dave
Welcome to you both.
UVM- I take it you had a Pet Scan? As for Chemo with the rads- recommended. This is C, UVM, and the only way to fight the fight is to error on the side of the aggressive. I would advise that if your Onco thinks it is the best route- then take that route.
UVM, and Suzanne and husband- this is 2010, and H&N can be treated successfully. You will survive this, and find that life beyond treatment is more than just acceptable. Nobody here will tell you the road is easy, though several can say their's was a lot easier than most of us. Keep your Drs. in the loop as to how you are physically handling it, and stay in the Positive, knowing you will survive this thing. All you gotta do is
Believe
kcass0 -
thanksKent Cass said:UVM and Suzanne
Welcome to you both.
UVM- I take it you had a Pet Scan? As for Chemo with the rads- recommended. This is C, UVM, and the only way to fight the fight is to error on the side of the aggressive. I would advise that if your Onco thinks it is the best route- then take that route.
UVM, and Suzanne and husband- this is 2010, and H&N can be treated successfully. You will survive this, and find that life beyond treatment is more than just acceptable. Nobody here will tell you the road is easy, though several can say their's was a lot easier than most of us. Keep your Drs. in the loop as to how you are physically handling it, and stay in the Positive, knowing you will survive this thing. All you gotta do is
Believe
kcass
Thanks everyone for welcoming me (and my husband) to this site. I've been telling everyone how helpful it has been! All of you are awsome people and I can't believe how knowledgable everyone is. I know I am really going to need the help more and more when my husband's treatments start (and help with the feeind tube issues if he gets one). Not sure how we are going to get through it, but I know that posting here is certainly going to help.
(BTW - my husband was able to eat a bean taco today (with a lot of water - but still...) - 1 week after the tonsillectomy.
Thanks again!
Suzanne0 -
You Will Get Through Itsusan0803 said:thanks
Thanks everyone for welcoming me (and my husband) to this site. I've been telling everyone how helpful it has been! All of you are awsome people and I can't believe how knowledgable everyone is. I know I am really going to need the help more and more when my husband's treatments start (and help with the feeind tube issues if he gets one). Not sure how we are going to get through it, but I know that posting here is certainly going to help.
(BTW - my husband was able to eat a bean taco today (with a lot of water - but still...) - 1 week after the tonsillectomy.
Thanks again!
Suzanne
Seems like you won't - but you will. It's the hardest thing my husband and I have ever been through, but you'll make it.
Stand tough and hold each other up on the bad days.0 -
SCC to the nodeScambuster said:Unusual analysis
Hi UMV,
While I am no expert in this, it would seem very unusual for superficial SCC from your forehead would metastasize. While SCC are more agressive cnacer than BCC, in skin Cancers they normallly invade local tissue and need to be very advanced before they metastasize.
Did they say you have an unknown primary ???
What did you PET/CT Scan show - assuming you had had one done ??
They would normally give you radiation (preferably IMRT) when they know exactly where to hit, while the Chemo would be used as a back up in the case they are unsure of any other areas that are affected. If the surgery remove all the cancer, then in theory, you shouldn't need either.
Radiation is like a huge 'fly swat' that hits something and kills it. Chemo is like 'fly spray' that fills the room, supposedly killing anything in the room. Just how many flies you have and where they are is the million dollar question.
I had SCC of the tonsil with 2 nodes showing light uptake from the PET/CT, less than a clear indication of cancer but enough to indicate inflammation, so they think the nodes were processing dead cancer cells. I had the surgery to remove the tumor in the tonsil area and 2 or my 3 Doctors said IMRT would be sufficient while 1 of the 3 (the Chemo Doctor) said I should also have Chemo to be sure. It was a difficult choice for me as you are now faced with the same thing. My ENT said due to the location of the tumor, he could not get 'clear margins' which mean 10mm, even though he thought he got it all. As such, he recommended we run with a course of the IMRT.
At the time, I had to make a choice and I opted for the surgery and thyn IMRT and the Chemo. The Chemo they used was Erbitux which is called a Target Therapy and it is not as heavy as many of the other Chemo drugs. I cannot claim it worked or I am better for it but I got through and am now doing well. I feel the Radiation did more damage to me than the Chemo but none of us can prove that. The side effects from Erbitux is a nasty rash for a few weeks. If I had to make the same decision again today, I would be as confused. I chose to hit it with everything.
I also have chosen to change my diet and lifestyle dramatically and so to find the exact reason for my now good health is hard to pinpoint, but my gut feeling is that careful nutrition has been the most important part of my recovery. See my Expression page for more detail.
I am sorry I have no clear answers but here you have my story and what I did.
Regds
Scam
Scam,
As you mention, this is an unusual scenario because SCC mets from the skin to the node only 2% of the time. My surgeon at MA Eye and Ear in Boston was very good. I am 2 1/2 weeks post-op and the scar is healing well. I have shoulder weakness, but nothing permanent except a numb right ear.
I did have a PET scan and it lit up only where the infected node was found (I had a biopsy prior to the PET, so I already knew it was SCC). They looked around with a tube down my nose for anything suspicious in the mouth, etc. because that is where the met to the node usually comes from, but I was all clear there. Also, I never smoked. The surgeon also checked my lung, esophagus, etc. during surgery (including taking a biopsy of my right tonsil) and all was clear. So, they strongly believe it came from the forehead, as opposed to being an "unknown primary". The reason for the radiation and possibly chemo was the extra capsular spread. He said he boxed out the node (level 2a), but couldn't be sure that some cells hadn't gotten out.
I am also very focused on good nutrition, exercise and staying stress free. I am lucky in that my employer is telling me to take whatever time I need to get better. Have you heard of an Ayurvedic herb formula named Armit Kalash? Someone recommended it to me.
I am also leaning towards hitting it with everything. How long was your radiation, and how often did they administer the chemo. Can you describe how significant the rash was? Was it just in the head and neck area, or all over? What do you feel was the damage from the radiation?
Thanks so much for your response, it's nice to know someone else out there had a similar experience. Deb0 -
Extra capsular spreadKimba1505 said:Extra capsular spread
These words would tell me to do the chemo in addition to the radiation. My partner, Mark, was diagnosed with SCC left tonsil in April. In May he had a radical neck disection. The surgeon had to do the radical instead of the modified/selective because of extra capsular spread to his neck muscle. He had the option of not doing chemo (not strongly recommended) but decided to throw the book at it. I must say, as he is done with treatment and recovering very well, it is the extra capsular spread to his neck that haunts me and can keep me awake at night.
My thoughts: "Throw the Book"!
Welcome to our boards, and very sorry you find yourself here.
Kim
Kim,
Thanks for your note. Yes, it is the extra capsular spread that haunts me as well. I will probably throw the book at it, as you suggest. Would you mind elaborating on Mark's course of treatment - length, frequency of chemo, etc? I am just trying to get my head around it. Deb0
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