› Forums › General Melanoma Community › Need Advice about tafinlar & mekinist
- This topic has 42 replies, 7 voices, and was last updated 12 years ago by
NYKaren.
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- February 11, 2014 at 11:15 pm
My Dr believes since I never responded to zelboraf the combo (tafinlar/mekinist) will not shrink anything either. My dermatologist said it targets the braf and mek but if I have the nras mutation it will not work. But they both want me to try it.
Are what they saying right or did I misunderstand them?
Can't they test to see if I have the nras mutation? If so why not test for the c-kit, gnaq, gna11? Others? Can they test it with a simple needle biopsy even in a bone tumor? If a person has the nras mutation and this combo does not work on that assuming that's true then why prescribe it?
I'm still trying to get into a pd1 trial but it is taking forever and if I take this it will exclude me unless I stop taking it 4 weeks before.
So far I've had radiation, zelboraf, yervoy.
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- February 11, 2014 at 11:27 pm
If you are not braf postive then I don't think you should be taking a braf inhibitor. I don't think you can have the nras mutation and braf. Have you been checked if you are braf postive? Others more educated can chime in. Best of luck
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- February 12, 2014 at 12:09 am
Yes I'm BRAF V600E but that is the only test they did. The dermatologist if I understood right said a person could have braf, nras and mek. Plus lots more depending on how damaged the skin was where the melanoma originated.
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- February 12, 2014 at 12:09 am
Yes I'm BRAF V600E but that is the only test they did. The dermatologist if I understood right said a person could have braf, nras and mek. Plus lots more depending on how damaged the skin was where the melanoma originated.
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- February 12, 2014 at 12:09 am
Yes I'm BRAF V600E but that is the only test they did. The dermatologist if I understood right said a person could have braf, nras and mek. Plus lots more depending on how damaged the skin was where the melanoma originated.
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- February 12, 2014 at 12:31 am
Hey again Arty,
Sorry things remain so confusing. If you like you can check my blog post from Jan 22, 2014 where I posted an article addressing the BRAF/MEK combo. It states specifically that it can work for patients with BRAF V600E or V600K. Additionally, you may want to check out a really fitting article for you attached to a response to Joy's post "Whats after Zelboraf…" It talks about using the combo dabrafenib and trametinib (with pretty good results!) in folks who progressed on BRAF.
Just so you know….Folks who are BRAF positve are usually NRAS negative.
HANG IN THERE!!!!! Sorry the folk with the anti-PD1 trial at Sarah Cannon are moving so slowly. You have options! You REALLY do! I know it is super hard at this time….but YOU got this!!! Yours, C
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- February 12, 2014 at 12:31 am
Hey again Arty,
Sorry things remain so confusing. If you like you can check my blog post from Jan 22, 2014 where I posted an article addressing the BRAF/MEK combo. It states specifically that it can work for patients with BRAF V600E or V600K. Additionally, you may want to check out a really fitting article for you attached to a response to Joy's post "Whats after Zelboraf…" It talks about using the combo dabrafenib and trametinib (with pretty good results!) in folks who progressed on BRAF.
Just so you know….Folks who are BRAF positve are usually NRAS negative.
HANG IN THERE!!!!! Sorry the folk with the anti-PD1 trial at Sarah Cannon are moving so slowly. You have options! You REALLY do! I know it is super hard at this time….but YOU got this!!! Yours, C
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- February 12, 2014 at 12:31 am
Hey again Arty,
Sorry things remain so confusing. If you like you can check my blog post from Jan 22, 2014 where I posted an article addressing the BRAF/MEK combo. It states specifically that it can work for patients with BRAF V600E or V600K. Additionally, you may want to check out a really fitting article for you attached to a response to Joy's post "Whats after Zelboraf…" It talks about using the combo dabrafenib and trametinib (with pretty good results!) in folks who progressed on BRAF.
Just so you know….Folks who are BRAF positve are usually NRAS negative.
HANG IN THERE!!!!! Sorry the folk with the anti-PD1 trial at Sarah Cannon are moving so slowly. You have options! You REALLY do! I know it is super hard at this time….but YOU got this!!! Yours, C
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- February 12, 2014 at 4:01 pm
Thank you. Yes I had read those but they didn't answer if I read it right if a person is NRAS positive whether the combo will still work. I don't know if I am. They only did a braf test via a surgical biopsy thus I was wondering if a needle biopsy would provide such a test. I'm saving my surgery energy for if they are going to do back surgery to keep me from being paralyzed due to the t10 vertebrae. I get a mri this evening to see. I'm not in much pain and still walk fine so I dunno. I just know the 1st hospital they kept saying the t10 would make me paralyzed so they rushed to radiation which finally quit working for sure last week based on pet scan.
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- February 12, 2014 at 4:01 pm
Thank you. Yes I had read those but they didn't answer if I read it right if a person is NRAS positive whether the combo will still work. I don't know if I am. They only did a braf test via a surgical biopsy thus I was wondering if a needle biopsy would provide such a test. I'm saving my surgery energy for if they are going to do back surgery to keep me from being paralyzed due to the t10 vertebrae. I get a mri this evening to see. I'm not in much pain and still walk fine so I dunno. I just know the 1st hospital they kept saying the t10 would make me paralyzed so they rushed to radiation which finally quit working for sure last week based on pet scan.
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- February 12, 2014 at 4:01 pm
Thank you. Yes I had read those but they didn't answer if I read it right if a person is NRAS positive whether the combo will still work. I don't know if I am. They only did a braf test via a surgical biopsy thus I was wondering if a needle biopsy would provide such a test. I'm saving my surgery energy for if they are going to do back surgery to keep me from being paralyzed due to the t10 vertebrae. I get a mri this evening to see. I'm not in much pain and still walk fine so I dunno. I just know the 1st hospital they kept saying the t10 would make me paralyzed so they rushed to radiation which finally quit working for sure last week based on pet scan.
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- February 12, 2014 at 4:56 pm
Hey Artie,
I am keeping all my fingers and toes crossed that you will have as good a report as possible from your MRI!!! I really doubt you are positive for NRAS if you already know you are BRAF positive. Since you say your tumor has already been tested and found positve for BRAF V600E, there is probably no need to worry about the NRAS issue…but you can ask your doc about it. If you end up having any additional surgery they can certainly test/retest then.
I am hopeful you will get some good news about the Amplimmune Anti-PD1 trial at Sarah Cannon soon!!!! BUG THE HECK OUT OF THEM!!!! Sorry, you have to be the one doing that…but….
STILL…the super cool, latest and greatest info coming out for you and other folks who advanced on BRAF is the data demonstrating (like Jerry said) that, though not at the high rates of response to BRAF that some folks experience initially, is the study's quote: "…in the…cohort of patients with prior disease progression during BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT [that's the dabrafenib and trametinib combo] therapy." Not perfect, I know! But, hey…it's something!!!!!
Hang in there. Will be sending good thoughts your way as the magnets spin round you this evening!! Celeste
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- February 12, 2014 at 4:56 pm
Hey Artie,
I am keeping all my fingers and toes crossed that you will have as good a report as possible from your MRI!!! I really doubt you are positive for NRAS if you already know you are BRAF positive. Since you say your tumor has already been tested and found positve for BRAF V600E, there is probably no need to worry about the NRAS issue…but you can ask your doc about it. If you end up having any additional surgery they can certainly test/retest then.
I am hopeful you will get some good news about the Amplimmune Anti-PD1 trial at Sarah Cannon soon!!!! BUG THE HECK OUT OF THEM!!!! Sorry, you have to be the one doing that…but….
STILL…the super cool, latest and greatest info coming out for you and other folks who advanced on BRAF is the data demonstrating (like Jerry said) that, though not at the high rates of response to BRAF that some folks experience initially, is the study's quote: "…in the…cohort of patients with prior disease progression during BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT [that's the dabrafenib and trametinib combo] therapy." Not perfect, I know! But, hey…it's something!!!!!
Hang in there. Will be sending good thoughts your way as the magnets spin round you this evening!! Celeste
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- February 12, 2014 at 4:56 pm
Hey Artie,
I am keeping all my fingers and toes crossed that you will have as good a report as possible from your MRI!!! I really doubt you are positive for NRAS if you already know you are BRAF positive. Since you say your tumor has already been tested and found positve for BRAF V600E, there is probably no need to worry about the NRAS issue…but you can ask your doc about it. If you end up having any additional surgery they can certainly test/retest then.
I am hopeful you will get some good news about the Amplimmune Anti-PD1 trial at Sarah Cannon soon!!!! BUG THE HECK OUT OF THEM!!!! Sorry, you have to be the one doing that…but….
STILL…the super cool, latest and greatest info coming out for you and other folks who advanced on BRAF is the data demonstrating (like Jerry said) that, though not at the high rates of response to BRAF that some folks experience initially, is the study's quote: "…in the…cohort of patients with prior disease progression during BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT [that's the dabrafenib and trametinib combo] therapy." Not perfect, I know! But, hey…it's something!!!!!
Hang in there. Will be sending good thoughts your way as the magnets spin round you this evening!! Celeste
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- February 12, 2014 at 12:56 am
Oh, Arthur, I am so sorry that you have to struggle with such difficult decisions. This is tough, it really is. I think that you have educated yourself really well about melanoma and about your treatment options. You seem to have a good grasp of the pros and cons of the BRAF+MEK combo versus the anti-PD1 trial. While there are many clinical trials out there, none of them have yet to show a better response rate than anti-PD1 (except perhaps anti-PDL1) and trying to find and qualify for any of them would probably take longer than waiting for Sarah Canon to come through.
I don't have any specific advice I can give you. You are going to have to go with your gut instincts on this. I don't think that either decision would be wrong. Both of your choices are good options and either or both of them could work for you. It's just so difficult to sit around waiting for a treatment to start. Ugh!
I will be praying for you that your path smooths out and that you get to start on your chosen treatment very soon.
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- February 12, 2014 at 12:56 am
Oh, Arthur, I am so sorry that you have to struggle with such difficult decisions. This is tough, it really is. I think that you have educated yourself really well about melanoma and about your treatment options. You seem to have a good grasp of the pros and cons of the BRAF+MEK combo versus the anti-PD1 trial. While there are many clinical trials out there, none of them have yet to show a better response rate than anti-PD1 (except perhaps anti-PDL1) and trying to find and qualify for any of them would probably take longer than waiting for Sarah Canon to come through.
I don't have any specific advice I can give you. You are going to have to go with your gut instincts on this. I don't think that either decision would be wrong. Both of your choices are good options and either or both of them could work for you. It's just so difficult to sit around waiting for a treatment to start. Ugh!
I will be praying for you that your path smooths out and that you get to start on your chosen treatment very soon.
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- February 12, 2014 at 12:56 am
Oh, Arthur, I am so sorry that you have to struggle with such difficult decisions. This is tough, it really is. I think that you have educated yourself really well about melanoma and about your treatment options. You seem to have a good grasp of the pros and cons of the BRAF+MEK combo versus the anti-PD1 trial. While there are many clinical trials out there, none of them have yet to show a better response rate than anti-PD1 (except perhaps anti-PDL1) and trying to find and qualify for any of them would probably take longer than waiting for Sarah Canon to come through.
I don't have any specific advice I can give you. You are going to have to go with your gut instincts on this. I don't think that either decision would be wrong. Both of your choices are good options and either or both of them could work for you. It's just so difficult to sit around waiting for a treatment to start. Ugh!
I will be praying for you that your path smooths out and that you get to start on your chosen treatment very soon.
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- February 12, 2014 at 3:15 am
I'd give it a try. My understanding is that Debrafenib is more specific to V600E than is Zelboraf, which can make it more effective. Add to that the MEK inhibitor and it seems to increase the percentage of people who respond and lengthen the time of response.
I know one of your concerns is getting into a PD- trial, but as you say, it's taking a while. You've got 2 doctors sayging try and in my experience that means they're concerned about waiting for a trial (I had 2 doctors pushing me too and I was stubborn as long as I could be). I finally had to give in and try them (granted I never tried Zel.) and knock on wood I'm doing really well with them. Can't speak about the NRAS thing either.
If it doesn't work you're no worse off than you are right now, right? Yes, you may have to stop them and wait a few weeks before a trial, but if it was working (and tumors shrink down some) that may actually be an advantage as you may be healthier entering the trial than you otherwise would have been. If they work, it may hold you over until PD-1 gains FDA approval (that's the hope for me) which may be approved sometime this year (cross your fingers).
One last question though, have you tried Yervoy or any other therapies?
Good luck
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- February 12, 2014 at 3:15 am
I'd give it a try. My understanding is that Debrafenib is more specific to V600E than is Zelboraf, which can make it more effective. Add to that the MEK inhibitor and it seems to increase the percentage of people who respond and lengthen the time of response.
I know one of your concerns is getting into a PD- trial, but as you say, it's taking a while. You've got 2 doctors sayging try and in my experience that means they're concerned about waiting for a trial (I had 2 doctors pushing me too and I was stubborn as long as I could be). I finally had to give in and try them (granted I never tried Zel.) and knock on wood I'm doing really well with them. Can't speak about the NRAS thing either.
If it doesn't work you're no worse off than you are right now, right? Yes, you may have to stop them and wait a few weeks before a trial, but if it was working (and tumors shrink down some) that may actually be an advantage as you may be healthier entering the trial than you otherwise would have been. If they work, it may hold you over until PD-1 gains FDA approval (that's the hope for me) which may be approved sometime this year (cross your fingers).
One last question though, have you tried Yervoy or any other therapies?
Good luck
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- February 12, 2014 at 3:15 am
I'd give it a try. My understanding is that Debrafenib is more specific to V600E than is Zelboraf, which can make it more effective. Add to that the MEK inhibitor and it seems to increase the percentage of people who respond and lengthen the time of response.
I know one of your concerns is getting into a PD- trial, but as you say, it's taking a while. You've got 2 doctors sayging try and in my experience that means they're concerned about waiting for a trial (I had 2 doctors pushing me too and I was stubborn as long as I could be). I finally had to give in and try them (granted I never tried Zel.) and knock on wood I'm doing really well with them. Can't speak about the NRAS thing either.
If it doesn't work you're no worse off than you are right now, right? Yes, you may have to stop them and wait a few weeks before a trial, but if it was working (and tumors shrink down some) that may actually be an advantage as you may be healthier entering the trial than you otherwise would have been. If they work, it may hold you over until PD-1 gains FDA approval (that's the hope for me) which may be approved sometime this year (cross your fingers).
One last question though, have you tried Yervoy or any other therapies?
Good luck
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- February 12, 2014 at 4:07 pm
Thank you. Yes I completed the 4th and last Yervoy dose 23 days ago. I didn't know Debraf was more specific for my V600E than Zel so that's a plus.
Both docs would prefer me to be on the PD1 and say I have much better chance with it. But they believe I cannot wait so I need to do the combo. But my main doc does not believe the combo will work for me. I guess I'll know more about my back and potential for paralysys after they review the mri I get this evening.
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- February 12, 2014 at 4:07 pm
Thank you. Yes I completed the 4th and last Yervoy dose 23 days ago. I didn't know Debraf was more specific for my V600E than Zel so that's a plus.
Both docs would prefer me to be on the PD1 and say I have much better chance with it. But they believe I cannot wait so I need to do the combo. But my main doc does not believe the combo will work for me. I guess I'll know more about my back and potential for paralysys after they review the mri I get this evening.
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- February 12, 2014 at 4:07 pm
Thank you. Yes I completed the 4th and last Yervoy dose 23 days ago. I didn't know Debraf was more specific for my V600E than Zel so that's a plus.
Both docs would prefer me to be on the PD1 and say I have much better chance with it. But they believe I cannot wait so I need to do the combo. But my main doc does not believe the combo will work for me. I guess I'll know more about my back and potential for paralysys after they review the mri I get this evening.
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- February 12, 2014 at 8:52 am
Artie, your doctor's advice is consistent with the conventional wisdom that most of those who have failed/progressed on zel will not benefit from the combo. However, your situation is somewhat unique in that you only have bone mets. So, my question is–does zel work on mets (and does it work on bone mets within the time range you were on it)? If yes, then the stats don't favor the combo (though you might still try it). If no, then perhaps it makes sense to try. Also consider consulting with one of the lead investigators for the combo like Flaherty at Dana Farber or Weber at Moffitt.
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- February 12, 2014 at 8:52 am
Artie, your doctor's advice is consistent with the conventional wisdom that most of those who have failed/progressed on zel will not benefit from the combo. However, your situation is somewhat unique in that you only have bone mets. So, my question is–does zel work on mets (and does it work on bone mets within the time range you were on it)? If yes, then the stats don't favor the combo (though you might still try it). If no, then perhaps it makes sense to try. Also consider consulting with one of the lead investigators for the combo like Flaherty at Dana Farber or Weber at Moffitt.
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- February 12, 2014 at 8:52 am
Artie, your doctor's advice is consistent with the conventional wisdom that most of those who have failed/progressed on zel will not benefit from the combo. However, your situation is somewhat unique in that you only have bone mets. So, my question is–does zel work on mets (and does it work on bone mets within the time range you were on it)? If yes, then the stats don't favor the combo (though you might still try it). If no, then perhaps it makes sense to try. Also consider consulting with one of the lead investigators for the combo like Flaherty at Dana Farber or Weber at Moffitt.
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- February 12, 2014 at 2:05 pm
Hi Mat and Arthur,
I've never been on Zel and am not as familiar with it as I am Debrafenib, but I do have mets in my spine (T10 and S5) and based on my last scans (and the dissapearance of pain) the combo at least stopped the progression of those mets. It is a good point though about checking to see what Zel's track record with bone mets is.
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- February 12, 2014 at 2:05 pm
Hi Mat and Arthur,
I've never been on Zel and am not as familiar with it as I am Debrafenib, but I do have mets in my spine (T10 and S5) and based on my last scans (and the dissapearance of pain) the combo at least stopped the progression of those mets. It is a good point though about checking to see what Zel's track record with bone mets is.
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- February 12, 2014 at 2:05 pm
Hi Mat and Arthur,
I've never been on Zel and am not as familiar with it as I am Debrafenib, but I do have mets in my spine (T10 and S5) and based on my last scans (and the dissapearance of pain) the combo at least stopped the progression of those mets. It is a good point though about checking to see what Zel's track record with bone mets is.
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- February 12, 2014 at 2:36 pm
I've likewise seen a reduction in bone mets on the combo. My doctor commented that it is rare to see a quick response with bone mets, but I'll speculate that her experience at that time (October at first scans) would've been based primarily on Zel since patients didn't start receiving The combo until July. In other words, the combo is probably better for bone mets, but I would ask the clinicians.
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- February 12, 2014 at 2:36 pm
I've likewise seen a reduction in bone mets on the combo. My doctor commented that it is rare to see a quick response with bone mets, but I'll speculate that her experience at that time (October at first scans) would've been based primarily on Zel since patients didn't start receiving The combo until July. In other words, the combo is probably better for bone mets, but I would ask the clinicians.
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- February 12, 2014 at 2:36 pm
I've likewise seen a reduction in bone mets on the combo. My doctor commented that it is rare to see a quick response with bone mets, but I'll speculate that her experience at that time (October at first scans) would've been based primarily on Zel since patients didn't start receiving The combo until July. In other words, the combo is probably better for bone mets, but I would ask the clinicians.
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- February 12, 2014 at 4:13 pm
Thank you both. My dr believed being on zel at max dose for 8 weeks would have seen some shrinkage even for bone mets. Instead I was 1 of his only 2 patients out of over 1000 he has had on zel that increased.
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- February 12, 2014 at 4:13 pm
Thank you both. My dr believed being on zel at max dose for 8 weeks would have seen some shrinkage even for bone mets. Instead I was 1 of his only 2 patients out of over 1000 he has had on zel that increased.
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- February 12, 2014 at 4:13 pm
Thank you both. My dr believed being on zel at max dose for 8 weeks would have seen some shrinkage even for bone mets. Instead I was 1 of his only 2 patients out of over 1000 he has had on zel that increased.
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- February 12, 2014 at 10:36 pm
Hi Arthur,
i progressed after 6 months of side-effect hell on Zel.
Started Tafinlar this past August and it was like a miracle drug. Large tumor in my ear is nearly gone, brain mets after gama knife still shrinking.
Added MEK in December, and while nothing so dramatic happened, my only side-effect has been peeling feet and one day of fever.
Hope this helps,
karen
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- February 12, 2014 at 10:36 pm
Hi Arthur,
i progressed after 6 months of side-effect hell on Zel.
Started Tafinlar this past August and it was like a miracle drug. Large tumor in my ear is nearly gone, brain mets after gama knife still shrinking.
Added MEK in December, and while nothing so dramatic happened, my only side-effect has been peeling feet and one day of fever.
Hope this helps,
karen
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- February 12, 2014 at 10:36 pm
Hi Arthur,
i progressed after 6 months of side-effect hell on Zel.
Started Tafinlar this past August and it was like a miracle drug. Large tumor in my ear is nearly gone, brain mets after gama knife still shrinking.
Added MEK in December, and while nothing so dramatic happened, my only side-effect has been peeling feet and one day of fever.
Hope this helps,
karen
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