› Forums › General Melanoma Community › Interferon or MEK162
- This topic has 33 replies, 7 voices, and was last updated 10 years, 3 months ago by
JerryfromFauq.
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- March 10, 2015 at 3:38 pm
Hi guys and gals, Im stopping by once again, second time in 2 years. Last yr my husband had a wide excision for melanoma, reached clear margins, oncologist said all looked good and released him. Just follow up with Derm and primary to check nodes. Well low and behold I once again caught his melanoma, you would of thought the dr would have huh! I noticed his node swollen and made a appt. After numerous test, surgery 2 weeks ago for a modified radical neck desection of around 30 nodes and partial parotidectomy, 5 nodes were postive. The oncologist said we reached clear margins, yay but what about last time. It has taken me lots of reserch to finally understand cancer has misroscopic cells that cannot be seen by the naked eye or test. All his test come back clear, MRI of brain, 3 ct scans, pet scan…. All clear except the nodes that have now been removed. So the paln is 6-7 weeks of radiation and then the dr said he had 2 options. Clinical trial MEK162 or Interferon. Need opinions and advice. He does road construction and we are in our 30s with 2 kids. Spent our only savings on drs the last 3 months and to hear the dr say he probably will have a hard time working due to being sick from treatment kinda deppresed us both. Have you done MEK162 trial? What were side effects? How was it administered and did you go home or stay in the hospitla the whole trial? Does insurance cover a clinical trial or is it pd for my the trial? What about radiation, what are the side effects? I have read about Interferon but would love to hear others experiance as well. Any advice on financial or disibility to help me provide for my family. We just bought our first house 2 years ago and bought a new car 2 weeks before we found out about his cancer returning. This is all overwhelming. Thanks for any advise!! By the way, we are from Texas.
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- March 10, 2015 at 3:53 pm
Hello
I'm sorry to hear that your husband's melanoma is back. My husband had a similar situation when he was early in his melanoma journey a couple of years ago. We were offered only Interferon after his radical neck dissection, as he did not have a gene mutation. He could also have done a clinical trial but one of the arms was Interferon and we didn't want to go that route. We decided against Interferon as our research showed that it does not increase overall survival rates, only delays the recurrence of the disease by a small amount of time. That was our personal decision and we don't regret it. We would have done a clinical trial if it offered another option than Interferon. We are Canadian, so I don't have answers about your insurance or financial assistance questions, sorry. Best of luck to you both!
Yasmin
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- March 10, 2015 at 3:53 pm
Hello
I'm sorry to hear that your husband's melanoma is back. My husband had a similar situation when he was early in his melanoma journey a couple of years ago. We were offered only Interferon after his radical neck dissection, as he did not have a gene mutation. He could also have done a clinical trial but one of the arms was Interferon and we didn't want to go that route. We decided against Interferon as our research showed that it does not increase overall survival rates, only delays the recurrence of the disease by a small amount of time. That was our personal decision and we don't regret it. We would have done a clinical trial if it offered another option than Interferon. We are Canadian, so I don't have answers about your insurance or financial assistance questions, sorry. Best of luck to you both!
Yasmin
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- March 10, 2015 at 10:33 pm
Unfortunately, my husband progressed to Stage 4 with a brain tumour 5 months after the radiation ended. That tumour was removed through surgery, followed by gamma knife radiation. 2 months after this was completed, he has tumours in his liver, spine, muscle and bone. He starts Yervoy treatments tomorrow.
Take care,
Yasmin
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- March 10, 2015 at 10:33 pm
Unfortunately, my husband progressed to Stage 4 with a brain tumour 5 months after the radiation ended. That tumour was removed through surgery, followed by gamma knife radiation. 2 months after this was completed, he has tumours in his liver, spine, muscle and bone. He starts Yervoy treatments tomorrow.
Take care,
Yasmin
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- March 10, 2015 at 10:33 pm
Unfortunately, my husband progressed to Stage 4 with a brain tumour 5 months after the radiation ended. That tumour was removed through surgery, followed by gamma knife radiation. 2 months after this was completed, he has tumours in his liver, spine, muscle and bone. He starts Yervoy treatments tomorrow.
Take care,
Yasmin
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- March 10, 2015 at 3:53 pm
Hello
I'm sorry to hear that your husband's melanoma is back. My husband had a similar situation when he was early in his melanoma journey a couple of years ago. We were offered only Interferon after his radical neck dissection, as he did not have a gene mutation. He could also have done a clinical trial but one of the arms was Interferon and we didn't want to go that route. We decided against Interferon as our research showed that it does not increase overall survival rates, only delays the recurrence of the disease by a small amount of time. That was our personal decision and we don't regret it. We would have done a clinical trial if it offered another option than Interferon. We are Canadian, so I don't have answers about your insurance or financial assistance questions, sorry. Best of luck to you both!
Yasmin
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- March 10, 2015 at 6:59 pm
So it sounds like he is stage 3 but currently NED following the scans. I would advise against Interferon – statistics do not support it and I would no longer consider it to be the best standard of care as newer, more effective treatments are now available. At stage 3 and NED your options for treatment would be limited – I do not know anything about that particular clinical trial but I am sure others can chime in. My udnerstanding is that many clinical trials pick up the expense of treatment, but I would double check that with the trial administrator.
Another perfectly viable option is to watch and wait. Since your husband is in a physical job and you are dependent on that income, I would strongly consider that option. It is a personal decision and I chose watch and wait myself… while I did progress to stage 4, they cut it out over a year ago and I have been NED ever since without any treatment beyond surgery. I am choosing to save the systemic treatment options for if/when they are truly needed.
I know it can be overwhelming – hang in there.
Kevin
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- March 10, 2015 at 6:59 pm
So it sounds like he is stage 3 but currently NED following the scans. I would advise against Interferon – statistics do not support it and I would no longer consider it to be the best standard of care as newer, more effective treatments are now available. At stage 3 and NED your options for treatment would be limited – I do not know anything about that particular clinical trial but I am sure others can chime in. My udnerstanding is that many clinical trials pick up the expense of treatment, but I would double check that with the trial administrator.
Another perfectly viable option is to watch and wait. Since your husband is in a physical job and you are dependent on that income, I would strongly consider that option. It is a personal decision and I chose watch and wait myself… while I did progress to stage 4, they cut it out over a year ago and I have been NED ever since without any treatment beyond surgery. I am choosing to save the systemic treatment options for if/when they are truly needed.
I know it can be overwhelming – hang in there.
Kevin
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- March 10, 2015 at 6:59 pm
So it sounds like he is stage 3 but currently NED following the scans. I would advise against Interferon – statistics do not support it and I would no longer consider it to be the best standard of care as newer, more effective treatments are now available. At stage 3 and NED your options for treatment would be limited – I do not know anything about that particular clinical trial but I am sure others can chime in. My udnerstanding is that many clinical trials pick up the expense of treatment, but I would double check that with the trial administrator.
Another perfectly viable option is to watch and wait. Since your husband is in a physical job and you are dependent on that income, I would strongly consider that option. It is a personal decision and I chose watch and wait myself… while I did progress to stage 4, they cut it out over a year ago and I have been NED ever since without any treatment beyond surgery. I am choosing to save the systemic treatment options for if/when they are truly needed.
I know it can be overwhelming – hang in there.
Kevin
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- March 10, 2015 at 7:19 pm
Kevin, thanks for the input. I need to get my husband involved in this group. He has no idea what we are facing, has done no reserch unlike me, I reserch daily. He is very agitated right now and I feel as if I am making the dessision for him like his life is in my hands. I guess we were hoping for the dr to make a dessision for us but he said the treatment was limited. I sure hate to see him take 6-7 weeks of radiation and be sick from it then go on to further treatment as well and be even sicker. Just the thought of there possibly being a miroscopic cell floating around getting ready to set up a home makes me feel we sound try something additional other than just the radiation. This is very hard to come to grips with on what to do.
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- March 10, 2015 at 7:19 pm
Kevin, thanks for the input. I need to get my husband involved in this group. He has no idea what we are facing, has done no reserch unlike me, I reserch daily. He is very agitated right now and I feel as if I am making the dessision for him like his life is in my hands. I guess we were hoping for the dr to make a dessision for us but he said the treatment was limited. I sure hate to see him take 6-7 weeks of radiation and be sick from it then go on to further treatment as well and be even sicker. Just the thought of there possibly being a miroscopic cell floating around getting ready to set up a home makes me feel we sound try something additional other than just the radiation. This is very hard to come to grips with on what to do.
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- March 10, 2015 at 7:19 pm
Kevin, thanks for the input. I need to get my husband involved in this group. He has no idea what we are facing, has done no reserch unlike me, I reserch daily. He is very agitated right now and I feel as if I am making the dessision for him like his life is in my hands. I guess we were hoping for the dr to make a dessision for us but he said the treatment was limited. I sure hate to see him take 6-7 weeks of radiation and be sick from it then go on to further treatment as well and be even sicker. Just the thought of there possibly being a miroscopic cell floating around getting ready to set up a home makes me feel we sound try something additional other than just the radiation. This is very hard to come to grips with on what to do.
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- March 10, 2015 at 7:52 pm
Hi Aundrea, I would like to give you a couple of things to think about. First in making a decision for treatment at stage 3 make sure it is in consultation with a Melanoma specialist. I have had radiation using cyberknife on brain mets( stage 4) and had no side effects. Radiation on other parts of the body at stage 3 seems a little different since there is no measureable tumor to deal with. I would want to get a second opinion on that one. If you decide to watch and wait by using scans, make sure the schedule is every 3 to 4 months for the first year at least. The science is advancing very quickly with new treatment options becoming available for stage 4 patients. M.D. Anderson is well know for treating Melanoma in Houston. Wishing you the best and welcome to the forum. Ed
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- March 10, 2015 at 7:52 pm
Hi Aundrea, I would like to give you a couple of things to think about. First in making a decision for treatment at stage 3 make sure it is in consultation with a Melanoma specialist. I have had radiation using cyberknife on brain mets( stage 4) and had no side effects. Radiation on other parts of the body at stage 3 seems a little different since there is no measureable tumor to deal with. I would want to get a second opinion on that one. If you decide to watch and wait by using scans, make sure the schedule is every 3 to 4 months for the first year at least. The science is advancing very quickly with new treatment options becoming available for stage 4 patients. M.D. Anderson is well know for treating Melanoma in Houston. Wishing you the best and welcome to the forum. Ed
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- March 10, 2015 at 7:52 pm
Hi Aundrea, I would like to give you a couple of things to think about. First in making a decision for treatment at stage 3 make sure it is in consultation with a Melanoma specialist. I have had radiation using cyberknife on brain mets( stage 4) and had no side effects. Radiation on other parts of the body at stage 3 seems a little different since there is no measureable tumor to deal with. I would want to get a second opinion on that one. If you decide to watch and wait by using scans, make sure the schedule is every 3 to 4 months for the first year at least. The science is advancing very quickly with new treatment options becoming available for stage 4 patients. M.D. Anderson is well know for treating Melanoma in Houston. Wishing you the best and welcome to the forum. Ed
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- March 11, 2015 at 12:14 am
Thanks for the replies. I just look up melanoma specialist and ironicly, the clinical trial our oncologist has refered us too is a melanoma specialist in dallas texas. I pulled it up on her too and it confirmed the exact dr we are refered to. Dr Cowey at the new cancer center at Baylor Dallas Charles Sammons cencer center. I am trying to keep my head up for my kids and make journey as pleasant as can be for them. I know they are scared too. Yasmin, im sorry to hear about your husband, prayers for healing and peace to you and your husband.
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- March 11, 2015 at 12:14 am
Thanks for the replies. I just look up melanoma specialist and ironicly, the clinical trial our oncologist has refered us too is a melanoma specialist in dallas texas. I pulled it up on her too and it confirmed the exact dr we are refered to. Dr Cowey at the new cancer center at Baylor Dallas Charles Sammons cencer center. I am trying to keep my head up for my kids and make journey as pleasant as can be for them. I know they are scared too. Yasmin, im sorry to hear about your husband, prayers for healing and peace to you and your husband.
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- March 11, 2015 at 12:14 am
Thanks for the replies. I just look up melanoma specialist and ironicly, the clinical trial our oncologist has refered us too is a melanoma specialist in dallas texas. I pulled it up on her too and it confirmed the exact dr we are refered to. Dr Cowey at the new cancer center at Baylor Dallas Charles Sammons cencer center. I am trying to keep my head up for my kids and make journey as pleasant as can be for them. I know they are scared too. Yasmin, im sorry to hear about your husband, prayers for healing and peace to you and your husband.
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- March 11, 2015 at 1:02 pm
Hi Aundrea,
I was in your husband's shoes a 3 years ago. I was stage 3 from the get-go and had a couple of recurrences. I had a PET with each recurrence and I was NED after being re-excised after the first recurrence. The next recurrence was about a year later and I did not have a PET in between recurrences. The PET on the second recurrence revealed I had progressed to stage 4.
In retrospect, I wish I had been getting more scans so that stage 4 could have been detected sooner. With the new immunotherapy drugs and various clinical trials, there is lots of hope but time is of the essence. Hopefully your husband will never progress to stage 4.
– Paul.
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- March 11, 2015 at 1:02 pm
Hi Aundrea,
I was in your husband's shoes a 3 years ago. I was stage 3 from the get-go and had a couple of recurrences. I had a PET with each recurrence and I was NED after being re-excised after the first recurrence. The next recurrence was about a year later and I did not have a PET in between recurrences. The PET on the second recurrence revealed I had progressed to stage 4.
In retrospect, I wish I had been getting more scans so that stage 4 could have been detected sooner. With the new immunotherapy drugs and various clinical trials, there is lots of hope but time is of the essence. Hopefully your husband will never progress to stage 4.
– Paul.
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- March 11, 2015 at 1:02 pm
Hi Aundrea,
I was in your husband's shoes a 3 years ago. I was stage 3 from the get-go and had a couple of recurrences. I had a PET with each recurrence and I was NED after being re-excised after the first recurrence. The next recurrence was about a year later and I did not have a PET in between recurrences. The PET on the second recurrence revealed I had progressed to stage 4.
In retrospect, I wish I had been getting more scans so that stage 4 could have been detected sooner. With the new immunotherapy drugs and various clinical trials, there is lots of hope but time is of the essence. Hopefully your husband will never progress to stage 4.
– Paul.
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- March 11, 2015 at 4:14 pm
Aundrea,
Sorry for the turmoil that you and your husband have endured. You have been given some good, though varied, (sadly, that is what things often boil down to with melanoma) by the folks who have responded. It does sound as though your husband would be considered Stage III, resected and NED (no evidence of disease). The only FDA approved treatment as an adjuvant (that's the name for the way your husband would be treated…meaning…treating those possible floating melanoma cells you referred to….so as [in theory] to prevent their causing more tumors vs treatment of active disease) is interferon. It is a very tough treatment, making folks ill such that they have to stop treatment, though plenty have seen it through. Sadly, it does not statistically prolong life expectancy in melanoma patients, though there are those who have done well afterwards. Watching and waiting…and 'cherry picking'….removing tumors surgically is an option as Kevin noted. However, here are several current and coming immunotherapy trial options for patients, both Stage III and IV resected, though there are many more.
1. Ipilmumab (ipi/Yervoy) vs high dose interferon sponsored by the National Cancer Institute which is now recruiting.
2. Pembrolizumab (Keytruda – an anti-PD1 product) vs nothing. Not recruiting as yet..but should be soon.
3. Ipi vs Nivo (Nivolumab/Opdivo – an anti-PD1 product). Will be recruiting within weeks at Moffitt Cancer Center in Tampa, Florida. I am not sure of other locations
Bottom line – it is ESSENTIAL that your husband be seen, followed and advised by a melanoma specialist, not just an oncologist. Trials are not easy. Trials sometimes come with the risk of getting no drug or a lesser drug and you have to weigh that in your decision. Cost varies with the trial. You can check all trials available, as well as their locations, exclusion and inclusion information at: https://clinicaltrials.gov/
Just enter something like 'melanoma and adjuvant' or 'melanoma stage III resected' in the search bubble. If you are interested in a particular trial – call the trial coordinator. I participated in a clinical trial of Nivo when I was stage IV NED in 2010. My fellow ratties and I are doing better than similar NED patients who had no treatment. Time will tell, but currently with the median time from start now at about 36 months, and some of us like myself at 52 months, and only 10 relapses (with 4 back NED, and 1 doing well in treatment) of the 33…the numbers are looking very good.
I wish you my best with whatever you choose. Celeste
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- March 11, 2015 at 4:14 pm
Aundrea,
Sorry for the turmoil that you and your husband have endured. You have been given some good, though varied, (sadly, that is what things often boil down to with melanoma) by the folks who have responded. It does sound as though your husband would be considered Stage III, resected and NED (no evidence of disease). The only FDA approved treatment as an adjuvant (that's the name for the way your husband would be treated…meaning…treating those possible floating melanoma cells you referred to….so as [in theory] to prevent their causing more tumors vs treatment of active disease) is interferon. It is a very tough treatment, making folks ill such that they have to stop treatment, though plenty have seen it through. Sadly, it does not statistically prolong life expectancy in melanoma patients, though there are those who have done well afterwards. Watching and waiting…and 'cherry picking'….removing tumors surgically is an option as Kevin noted. However, here are several current and coming immunotherapy trial options for patients, both Stage III and IV resected, though there are many more.
1. Ipilmumab (ipi/Yervoy) vs high dose interferon sponsored by the National Cancer Institute which is now recruiting.
2. Pembrolizumab (Keytruda – an anti-PD1 product) vs nothing. Not recruiting as yet..but should be soon.
3. Ipi vs Nivo (Nivolumab/Opdivo – an anti-PD1 product). Will be recruiting within weeks at Moffitt Cancer Center in Tampa, Florida. I am not sure of other locations
Bottom line – it is ESSENTIAL that your husband be seen, followed and advised by a melanoma specialist, not just an oncologist. Trials are not easy. Trials sometimes come with the risk of getting no drug or a lesser drug and you have to weigh that in your decision. Cost varies with the trial. You can check all trials available, as well as their locations, exclusion and inclusion information at: https://clinicaltrials.gov/
Just enter something like 'melanoma and adjuvant' or 'melanoma stage III resected' in the search bubble. If you are interested in a particular trial – call the trial coordinator. I participated in a clinical trial of Nivo when I was stage IV NED in 2010. My fellow ratties and I are doing better than similar NED patients who had no treatment. Time will tell, but currently with the median time from start now at about 36 months, and some of us like myself at 52 months, and only 10 relapses (with 4 back NED, and 1 doing well in treatment) of the 33…the numbers are looking very good.
I wish you my best with whatever you choose. Celeste
-
- March 11, 2015 at 4:14 pm
Aundrea,
Sorry for the turmoil that you and your husband have endured. You have been given some good, though varied, (sadly, that is what things often boil down to with melanoma) by the folks who have responded. It does sound as though your husband would be considered Stage III, resected and NED (no evidence of disease). The only FDA approved treatment as an adjuvant (that's the name for the way your husband would be treated…meaning…treating those possible floating melanoma cells you referred to….so as [in theory] to prevent their causing more tumors vs treatment of active disease) is interferon. It is a very tough treatment, making folks ill such that they have to stop treatment, though plenty have seen it through. Sadly, it does not statistically prolong life expectancy in melanoma patients, though there are those who have done well afterwards. Watching and waiting…and 'cherry picking'….removing tumors surgically is an option as Kevin noted. However, here are several current and coming immunotherapy trial options for patients, both Stage III and IV resected, though there are many more.
1. Ipilmumab (ipi/Yervoy) vs high dose interferon sponsored by the National Cancer Institute which is now recruiting.
2. Pembrolizumab (Keytruda – an anti-PD1 product) vs nothing. Not recruiting as yet..but should be soon.
3. Ipi vs Nivo (Nivolumab/Opdivo – an anti-PD1 product). Will be recruiting within weeks at Moffitt Cancer Center in Tampa, Florida. I am not sure of other locations
Bottom line – it is ESSENTIAL that your husband be seen, followed and advised by a melanoma specialist, not just an oncologist. Trials are not easy. Trials sometimes come with the risk of getting no drug or a lesser drug and you have to weigh that in your decision. Cost varies with the trial. You can check all trials available, as well as their locations, exclusion and inclusion information at: https://clinicaltrials.gov/
Just enter something like 'melanoma and adjuvant' or 'melanoma stage III resected' in the search bubble. If you are interested in a particular trial – call the trial coordinator. I participated in a clinical trial of Nivo when I was stage IV NED in 2010. My fellow ratties and I are doing better than similar NED patients who had no treatment. Time will tell, but currently with the median time from start now at about 36 months, and some of us like myself at 52 months, and only 10 relapses (with 4 back NED, and 1 doing well in treatment) of the 33…the numbers are looking very good.
I wish you my best with whatever you choose. Celeste
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- March 11, 2015 at 5:11 pm
Personally I would got the MEK trial route. You did not say what your husbands oncoprotein/DNA mutation is. THE MEK signaling path can be involved with more than one DNA mutation. I would expect to see the MEK trials have a higher positive RFS and OS rate than the interferon does for most. It w ill take trials to prove the MEK. There has been m any studies that show what can be expected from interferon.
IL-2 and TIL/ACT are the treatments that one spends the most time in the hospital (unless one is in the small group that has major Yervoy or anti-pd-1 negative side effects.
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- March 11, 2015 at 5:11 pm
Personally I would got the MEK trial route. You did not say what your husbands oncoprotein/DNA mutation is. THE MEK signaling path can be involved with more than one DNA mutation. I would expect to see the MEK trials have a higher positive RFS and OS rate than the interferon does for most. It w ill take trials to prove the MEK. There has been m any studies that show what can be expected from interferon.
IL-2 and TIL/ACT are the treatments that one spends the most time in the hospital (unless one is in the small group that has major Yervoy or anti-pd-1 negative side effects.
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- March 11, 2015 at 5:11 pm
Personally I would got the MEK trial route. You did not say what your husbands oncoprotein/DNA mutation is. THE MEK signaling path can be involved with more than one DNA mutation. I would expect to see the MEK trials have a higher positive RFS and OS rate than the interferon does for most. It w ill take trials to prove the MEK. There has been m any studies that show what can be expected from interferon.
IL-2 and TIL/ACT are the treatments that one spends the most time in the hospital (unless one is in the small group that has major Yervoy or anti-pd-1 negative side effects.
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