› Forums › General Melanoma Community › ERK trial – should I do it
- This topic has 45 replies, 11 voices, and was last updated 10 years, 10 months ago by
Bubbles.
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- April 16, 2015 at 3:54 am
I have my next scan Monday and my doc is already thinking I should be on his ERK trial. Zelboraf and the taf/mek combo both failed me wih zelboraf having really poor quality of life side affects while I was on the med. So I'm very Leary of these targeted therapies for me. If they had shrank even one tumor I might be less skeptical but they didn't. Yervoy didn't shrink anything either. Only keytruda has done that. So for me at least I don't see how this ERK will be any different. It just targets a gene further up the same chain. Granted I'm glad they have something.
They did say they have had 2 people have partial remission so it does help some people. So am I being stupid to not do this or is there something better for me?
For about 4 weeks I've been feeling great and my LDH has continued to drop to 301. Way better than 840 in January. I can walk non stop for 30 minutes again. Sure I have issues and pains and tire out fairly quickly but nothing like a few months ago before the ton of radiation which I think I've fully recovered from.
I think TIL is a good option since Im strong enough now but I doubt if the scan will show any non radiated tumor they can harvest but it might. They wouldn't do the harvest and store it for later at Bethesda at least not for me when I asked.
i also think pd1 combined with some other med like maybe antilag3 might be good for me. The plan was after this scan if needed to go to dr Gajewski in Chicago to see what he thinks is best for me since he has that trial.
Otherwise I'm not seeing other options for me. Most I'm excluded because I've done standard treatments. Some like the awesome virus treatment in Utah I'm excluded because I have bone metastasis.
So I'm very frustrated about not seeing good options and very worried especially since the nurse called me about this ERK thing today. Same trial they said at my last scan in november. I'm still hoping though the scan Monday shows no new stuff and everything shrinking or staying the same. That would be a first for me and I would stay on keytruda and thank God for such a miracle.
Sorry to bother everyone. I guess the scanxiety is really getting to me especially after that call from the nurse today about ERK.
Artie
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- April 16, 2015 at 9:43 am
Hi artie
so glad to hear you are feeling a bit better! There are much more informed ppl on this site than I am to help you with this decision, but you are the most informed of all! You will know what to do but I was just wondering if you can wait till after the scan to decide. I am excited for you as I am sure the scan will show improvements! If you do this trial will that exclude you from any up and coming new therapies like if the one in Utah becomes available ex trial?
anne-Louise
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- April 16, 2015 at 9:43 am
Hi artie
so glad to hear you are feeling a bit better! There are much more informed ppl on this site than I am to help you with this decision, but you are the most informed of all! You will know what to do but I was just wondering if you can wait till after the scan to decide. I am excited for you as I am sure the scan will show improvements! If you do this trial will that exclude you from any up and coming new therapies like if the one in Utah becomes available ex trial?
anne-Louise
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- April 16, 2015 at 9:43 am
Hi artie
so glad to hear you are feeling a bit better! There are much more informed ppl on this site than I am to help you with this decision, but you are the most informed of all! You will know what to do but I was just wondering if you can wait till after the scan to decide. I am excited for you as I am sure the scan will show improvements! If you do this trial will that exclude you from any up and coming new therapies like if the one in Utah becomes available ex trial?
anne-Louise
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- April 16, 2015 at 11:30 am
Hi Artie! I was just thinking about you yesterday, wondering if you had that scan yet… Question answered! I'm glad you are feeling much better! Dr. Gajewski in Chicago was the doc I saw for my primary melanoma back in 2006. All I did back then was the WLE and SNB. I was very happy with Gajewski and UCH. Now I live very close to Bethesda, and considered the TIL, but ultimately chose the ipi + nivo trial at Hopkins. I can't offer you much advice about the trials you mentioned, but wonder if you can make a decision after your scan? You have been such a help for me, I'm sorry I can't offer the same knowledge… But I pray for you everyday, and am sending you some good vibes this week for some good scan results!!!!
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- April 16, 2015 at 11:30 am
Hi Artie! I was just thinking about you yesterday, wondering if you had that scan yet… Question answered! I'm glad you are feeling much better! Dr. Gajewski in Chicago was the doc I saw for my primary melanoma back in 2006. All I did back then was the WLE and SNB. I was very happy with Gajewski and UCH. Now I live very close to Bethesda, and considered the TIL, but ultimately chose the ipi + nivo trial at Hopkins. I can't offer you much advice about the trials you mentioned, but wonder if you can make a decision after your scan? You have been such a help for me, I'm sorry I can't offer the same knowledge… But I pray for you everyday, and am sending you some good vibes this week for some good scan results!!!!
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- April 16, 2015 at 11:30 am
Hi Artie! I was just thinking about you yesterday, wondering if you had that scan yet… Question answered! I'm glad you are feeling much better! Dr. Gajewski in Chicago was the doc I saw for my primary melanoma back in 2006. All I did back then was the WLE and SNB. I was very happy with Gajewski and UCH. Now I live very close to Bethesda, and considered the TIL, but ultimately chose the ipi + nivo trial at Hopkins. I can't offer you much advice about the trials you mentioned, but wonder if you can make a decision after your scan? You have been such a help for me, I'm sorry I can't offer the same knowledge… But I pray for you everyday, and am sending you some good vibes this week for some good scan results!!!!
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- April 16, 2015 at 12:26 pm
Thank you. Yes I can wait until after the scan to decide. Back in November when the doc first mentioned it he said he was having difficulty findining anyone to do the trial. Apparently they've had some since then with 2 having partial remission. I have no idea how it would affect future treatments but expect it would be along the same lines of having done braf.
Artie
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- April 16, 2015 at 12:26 pm
Thank you. Yes I can wait until after the scan to decide. Back in November when the doc first mentioned it he said he was having difficulty findining anyone to do the trial. Apparently they've had some since then with 2 having partial remission. I have no idea how it would affect future treatments but expect it would be along the same lines of having done braf.
Artie
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- April 16, 2015 at 12:26 pm
Thank you. Yes I can wait until after the scan to decide. Back in November when the doc first mentioned it he said he was having difficulty findining anyone to do the trial. Apparently they've had some since then with 2 having partial remission. I have no idea how it would affect future treatments but expect it would be along the same lines of having done braf.
Artie
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- April 16, 2015 at 3:01 pm
Artie, some quick thoughts. I haven't researched ERK, but if it works like the other targeted therapies–it either works or it doesn't work, and you'll know quickly (first scans). See what the trial scan schedule looks like. You can move back to PD-1 if it doesn't work (recognizing that there are no guarantees that PD-1 will work a second time and you'll want your specialists to help assess the probability).
Regarding anti-LAG and PD-1, I haven't looked–but are you sure that it doesn't exclude prior PD-1?
Regarding TIL, it seems like other sites (Seatlle, MDA) are less stringent in their criteria. Of course, they are less established than NIH and I have no idea what the cost to the patient is at those sites.
Tough choices, but you're gathering the information/inputs in the right way to make the best decision posssible.
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- April 16, 2015 at 3:01 pm
Artie, some quick thoughts. I haven't researched ERK, but if it works like the other targeted therapies–it either works or it doesn't work, and you'll know quickly (first scans). See what the trial scan schedule looks like. You can move back to PD-1 if it doesn't work (recognizing that there are no guarantees that PD-1 will work a second time and you'll want your specialists to help assess the probability).
Regarding anti-LAG and PD-1, I haven't looked–but are you sure that it doesn't exclude prior PD-1?
Regarding TIL, it seems like other sites (Seatlle, MDA) are less stringent in their criteria. Of course, they are less established than NIH and I have no idea what the cost to the patient is at those sites.
Tough choices, but you're gathering the information/inputs in the right way to make the best decision posssible.
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- April 16, 2015 at 3:01 pm
Artie, some quick thoughts. I haven't researched ERK, but if it works like the other targeted therapies–it either works or it doesn't work, and you'll know quickly (first scans). See what the trial scan schedule looks like. You can move back to PD-1 if it doesn't work (recognizing that there are no guarantees that PD-1 will work a second time and you'll want your specialists to help assess the probability).
Regarding anti-LAG and PD-1, I haven't looked–but are you sure that it doesn't exclude prior PD-1?
Regarding TIL, it seems like other sites (Seatlle, MDA) are less stringent in their criteria. Of course, they are less established than NIH and I have no idea what the cost to the patient is at those sites.
Tough choices, but you're gathering the information/inputs in the right way to make the best decision posssible.
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- April 16, 2015 at 3:29 pm
Hey Artie,
So VERY glad to hear that you are feeling better!! That is sooooooo GREAT!! Choosing what to do next…if we have to do something next….how to do something next…is so confusing and nerve wracking, isn't it??!!!!! Obviously, like I think you are indicating, I would stay on Keytruda if things continue to look good on your upcoming scans. (Fingers and everything crossed!!!) IF however, things do not look so good…I would meet with (at least by phone) all the players. Talk about ERK in specifics, pin down folks on your TIL options, and visit the anti-LAG3 folks in particular. (I've posted about it before…Mat, there is a specific LAG-3 arm for folks who have progressed on anti-PD1.) You are correct about the fact that ERK is a targeted therapy in the same pathway as the BRAF inhibitors, albeit downstream kindof at the intersection of the MAPK pathway. Unfortunately, the ratties involved will be the ones to tell us if folks who didn't respond to BRAFi will actually respond here.
Here is a link to a study Ribas was involved in that looked at ERK's effectiveness in various melanoma cell lines: http://www.molecular-cancer.com/content/13/1/194 However, I can't be absolutely certain that this is the exact ERK med the study you've been offered is using. I'll post more for you if I find something.
Hang in there. Keep us posted. Try not to worry! (I know…not possible!) Much love, Celeste
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- April 18, 2015 at 2:35 am
Looks like that ERK at least might work on non braf although supposedly I'm braf neither of the braf treatments shrank anything. I guess I'll find out Monday what type of ERK it is.
Artie
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- April 18, 2015 at 2:35 am
Looks like that ERK at least might work on non braf although supposedly I'm braf neither of the braf treatments shrank anything. I guess I'll find out Monday what type of ERK it is.
Artie
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- April 18, 2015 at 2:35 am
Looks like that ERK at least might work on non braf although supposedly I'm braf neither of the braf treatments shrank anything. I guess I'll find out Monday what type of ERK it is.
Artie
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- April 16, 2015 at 3:29 pm
Hey Artie,
So VERY glad to hear that you are feeling better!! That is sooooooo GREAT!! Choosing what to do next…if we have to do something next….how to do something next…is so confusing and nerve wracking, isn't it??!!!!! Obviously, like I think you are indicating, I would stay on Keytruda if things continue to look good on your upcoming scans. (Fingers and everything crossed!!!) IF however, things do not look so good…I would meet with (at least by phone) all the players. Talk about ERK in specifics, pin down folks on your TIL options, and visit the anti-LAG3 folks in particular. (I've posted about it before…Mat, there is a specific LAG-3 arm for folks who have progressed on anti-PD1.) You are correct about the fact that ERK is a targeted therapy in the same pathway as the BRAF inhibitors, albeit downstream kindof at the intersection of the MAPK pathway. Unfortunately, the ratties involved will be the ones to tell us if folks who didn't respond to BRAFi will actually respond here.
Here is a link to a study Ribas was involved in that looked at ERK's effectiveness in various melanoma cell lines: http://www.molecular-cancer.com/content/13/1/194 However, I can't be absolutely certain that this is the exact ERK med the study you've been offered is using. I'll post more for you if I find something.
Hang in there. Keep us posted. Try not to worry! (I know…not possible!) Much love, Celeste
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- April 16, 2015 at 3:29 pm
Hey Artie,
So VERY glad to hear that you are feeling better!! That is sooooooo GREAT!! Choosing what to do next…if we have to do something next….how to do something next…is so confusing and nerve wracking, isn't it??!!!!! Obviously, like I think you are indicating, I would stay on Keytruda if things continue to look good on your upcoming scans. (Fingers and everything crossed!!!) IF however, things do not look so good…I would meet with (at least by phone) all the players. Talk about ERK in specifics, pin down folks on your TIL options, and visit the anti-LAG3 folks in particular. (I've posted about it before…Mat, there is a specific LAG-3 arm for folks who have progressed on anti-PD1.) You are correct about the fact that ERK is a targeted therapy in the same pathway as the BRAF inhibitors, albeit downstream kindof at the intersection of the MAPK pathway. Unfortunately, the ratties involved will be the ones to tell us if folks who didn't respond to BRAFi will actually respond here.
Here is a link to a study Ribas was involved in that looked at ERK's effectiveness in various melanoma cell lines: http://www.molecular-cancer.com/content/13/1/194 However, I can't be absolutely certain that this is the exact ERK med the study you've been offered is using. I'll post more for you if I find something.
Hang in there. Keep us posted. Try not to worry! (I know…not possible!) Much love, Celeste
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- April 16, 2015 at 5:52 pm
I appreciate your bringing this up, Artie. I've been following your posts and wish you all the best. My last scans showed some progression on PD-1 so the doctors are recommending I try something else to take care of those tumors. The ERK trial is a possibility in addition to some other trials with combinations of targeted drugs. I've tried Ipi which was followed by a Braf inhibitor combo and still saw progression. I've been on the anti-PD1 for about 6 months. Side effects have been minimal for me and I feel good. I haven't tried IL-2 but they're suggesting it as a next step before the ERK trial perhaps. It's so frustrating trying to negotiate the best way to try these treatments and I'm nervous about the IL-2. I am thankful for options however. I'll be thinking of you on Monday, hoping for stability and shrinkage!
Gwen
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- April 18, 2015 at 2:32 am
Gwen if you are considering IL-2 you might want to consider TIL. Part of it is usually il-2 although some trials have started other things. Just a thought someone else mentioned on here before.
Artie
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- April 18, 2015 at 2:32 am
Gwen if you are considering IL-2 you might want to consider TIL. Part of it is usually il-2 although some trials have started other things. Just a thought someone else mentioned on here before.
Artie
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- April 18, 2015 at 2:32 am
Gwen if you are considering IL-2 you might want to consider TIL. Part of it is usually il-2 although some trials have started other things. Just a thought someone else mentioned on here before.
Artie
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- April 19, 2015 at 7:19 pm
It's something I've thought about but I'm not sure about the travel (I'm seen at Dana Farber) as long as there's other options. I'll definitely bring it up again though, this week when I meet with my doctor to discuss the next plan.
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- April 19, 2015 at 7:19 pm
It's something I've thought about but I'm not sure about the travel (I'm seen at Dana Farber) as long as there's other options. I'll definitely bring it up again though, this week when I meet with my doctor to discuss the next plan.
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- April 19, 2015 at 7:19 pm
It's something I've thought about but I'm not sure about the travel (I'm seen at Dana Farber) as long as there's other options. I'll definitely bring it up again though, this week when I meet with my doctor to discuss the next plan.
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- April 16, 2015 at 5:52 pm
I appreciate your bringing this up, Artie. I've been following your posts and wish you all the best. My last scans showed some progression on PD-1 so the doctors are recommending I try something else to take care of those tumors. The ERK trial is a possibility in addition to some other trials with combinations of targeted drugs. I've tried Ipi which was followed by a Braf inhibitor combo and still saw progression. I've been on the anti-PD1 for about 6 months. Side effects have been minimal for me and I feel good. I haven't tried IL-2 but they're suggesting it as a next step before the ERK trial perhaps. It's so frustrating trying to negotiate the best way to try these treatments and I'm nervous about the IL-2. I am thankful for options however. I'll be thinking of you on Monday, hoping for stability and shrinkage!
Gwen
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- April 16, 2015 at 5:52 pm
I appreciate your bringing this up, Artie. I've been following your posts and wish you all the best. My last scans showed some progression on PD-1 so the doctors are recommending I try something else to take care of those tumors. The ERK trial is a possibility in addition to some other trials with combinations of targeted drugs. I've tried Ipi which was followed by a Braf inhibitor combo and still saw progression. I've been on the anti-PD1 for about 6 months. Side effects have been minimal for me and I feel good. I haven't tried IL-2 but they're suggesting it as a next step before the ERK trial perhaps. It's so frustrating trying to negotiate the best way to try these treatments and I'm nervous about the IL-2. I am thankful for options however. I'll be thinking of you on Monday, hoping for stability and shrinkage!
Gwen
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- April 16, 2015 at 9:07 pm
So glad you are feeling better Artie! Great to hear.
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- April 17, 2015 at 12:29 pm
I don't have much in the line of advice to offer you but I'm so happy to hear you're feeling better, Artie! I'm hoping and praying that your scans look good on Monday. Your LDH is certainly looking better and you sound much more upbeat!
I'll be thinking of you and looking forward to hearing from you next week!
Terrie
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- April 17, 2015 at 12:29 pm
I don't have much in the line of advice to offer you but I'm so happy to hear you're feeling better, Artie! I'm hoping and praying that your scans look good on Monday. Your LDH is certainly looking better and you sound much more upbeat!
I'll be thinking of you and looking forward to hearing from you next week!
Terrie
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- April 17, 2015 at 12:29 pm
I don't have much in the line of advice to offer you but I'm so happy to hear you're feeling better, Artie! I'm hoping and praying that your scans look good on Monday. Your LDH is certainly looking better and you sound much more upbeat!
I'll be thinking of you and looking forward to hearing from you next week!
Terrie
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- April 16, 2015 at 9:07 pm
So glad you are feeling better Artie! Great to hear.
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- April 16, 2015 at 9:07 pm
So glad you are feeling better Artie! Great to hear.
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