Update: Progression on GSK’s BRAF inhibitor and other adventures
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Update: Progression on GSK’s BRAF inhibitor and other adventures

› Forums › General Melanoma Community › Update: Progression on GSK’s BRAF inhibitor and other adventures

  • Post
    • May 21, 2012 at 10:12 am
    benp
    Participant

    Hi, 

    I've been on GSK's BRAF inhibitor since July 2011. After experiencing severe abdominal cramps several weeks ago, a CT showed a small bowel intussusception, which is (in adults) usually caused by a tumor. 

    Long story short, I underwent surgery to examine the cause, and a small bowel met measuring 3cm was removed. Bowel surgery is surpsingly much more "uncomfortable than a cranitotomy!

    Hi, 

    I've been on GSK's BRAF inhibitor since July 2011. After experiencing severe abdominal cramps several weeks ago, a CT showed a small bowel intussusception, which is (in adults) usually caused by a tumor. 

    Long story short, I underwent surgery to examine the cause, and a small bowel met measuring 3cm was removed. Bowel surgery is surpsingly much more "uncomfortable than a cranitotomy!

    My brain MRI also showed likely progression in 1 met, so it was suggested that I receive tratment with Gamma Knife on all my brain lesions. I completed this today. Not a very pleasurable experience, though very good to have done. 

    Currently I'm staying on the drug, awaiting for a vacancy (!) in another trial. Sometimes it seems strange that we're now experiencing an explosion in therapies for melanoma, though it's still very hard to find a place in a good trial.

    Thanks for reading, 

    Ben.

Viewing 17 reply threads
  • Replies
      • May 21, 2012 at 10:28 am
      Fen
      Participant

      You've been through a lot lately, Ben.  I hope you find a place in a trial soon. Please keep updating the board.  Fen

      • May 21, 2012 at 10:28 am
      Fen
      Participant

      You've been through a lot lately, Ben.  I hope you find a place in a trial soon. Please keep updating the board.  Fen

        • May 21, 2012 at 11:22 am
        deardad
        Participant

        Sorry to hear that Ben, hope that a trial comes you're way soon. Have you heard about Dabrafenib/MEK combo? Not sure if you can go onto another BRAF inhibitor after progressing on one? but this one has shown great results with brain mets.

        All the best.

        Nahmi from Melbourne

        • May 21, 2012 at 11:22 am
        deardad
        Participant

        Sorry to hear that Ben, hope that a trial comes you're way soon. Have you heard about Dabrafenib/MEK combo? Not sure if you can go onto another BRAF inhibitor after progressing on one? but this one has shown great results with brain mets.

        All the best.

        Nahmi from Melbourne

        • May 21, 2012 at 11:22 am
        deardad
        Participant

        Sorry to hear that Ben, hope that a trial comes you're way soon. Have you heard about Dabrafenib/MEK combo? Not sure if you can go onto another BRAF inhibitor after progressing on one? but this one has shown great results with brain mets.

        All the best.

        Nahmi from Melbourne

        • May 22, 2012 at 12:33 pm
        benp
        Participant

        Hi Nahmi,

        I asked today – there was one arm that did include this, though this closed quite some time ago. Not many options in Australia at the moment.

        • May 22, 2012 at 12:33 pm
        benp
        Participant

        Hi Nahmi,

        I asked today – there was one arm that did include this, though this closed quite some time ago. Not many options in Australia at the moment.

        • May 22, 2012 at 12:33 pm
        benp
        Participant

        Hi Nahmi,

        I asked today – there was one arm that did include this, though this closed quite some time ago. Not many options in Australia at the moment.

      • May 21, 2012 at 10:28 am
      Fen
      Participant

      You've been through a lot lately, Ben.  I hope you find a place in a trial soon. Please keep updating the board.  Fen

      • May 21, 2012 at 4:36 pm
      john partrick michael murphy
      Participant
      He warrior, you are fighting so hard. I am in the study with you, since December of 2010, and I have been more fortunate so far. Had a good dose of EN for about five weeks, but it cleared. If you are still in the BRAF / MEK study it must still be working or they would have excused you from the study from what I hear. do keep us informed, as we who are there with you in the study feel like instant family, to take a line from Jim F. another cohort.
      John Murphy
      • May 21, 2012 at 4:36 pm
      john partrick michael murphy
      Participant
      He warrior, you are fighting so hard. I am in the study with you, since December of 2010, and I have been more fortunate so far. Had a good dose of EN for about five weeks, but it cleared. If you are still in the BRAF / MEK study it must still be working or they would have excused you from the study from what I hear. do keep us informed, as we who are there with you in the study feel like instant family, to take a line from Jim F. another cohort.
      John Murphy
      • May 21, 2012 at 4:36 pm
      john partrick michael murphy
      Participant
      He warrior, you are fighting so hard. I am in the study with you, since December of 2010, and I have been more fortunate so far. Had a good dose of EN for about five weeks, but it cleared. If you are still in the BRAF / MEK study it must still be working or they would have excused you from the study from what I hear. do keep us informed, as we who are there with you in the study feel like instant family, to take a line from Jim F. another cohort.
      John Murphy
        • May 22, 2012 at 12:47 pm
        benp
        Participant

        Hi John, I'm not in the combo study, just the braf mono trial. I believe that I will be continuing the drug, even if I do leave the study. I will find out more shortly and let you know. Good luck, you sound like you're going really well on this treastment!

        Ben.

        • May 22, 2012 at 12:47 pm
        benp
        Participant

        Hi John, I'm not in the combo study, just the braf mono trial. I believe that I will be continuing the drug, even if I do leave the study. I will find out more shortly and let you know. Good luck, you sound like you're going really well on this treastment!

        Ben.

        • May 22, 2012 at 12:47 pm
        benp
        Participant

        Hi John, I'm not in the combo study, just the braf mono trial. I believe that I will be continuing the drug, even if I do leave the study. I will find out more shortly and let you know. Good luck, you sound like you're going really well on this treastment!

        Ben.

      • May 21, 2012 at 5:37 pm
      UrsulaZ
      Participant

      hi Ben — I'm newish here, but always enjoy your posts. Thanks for the update. 

      Do you think the bowel surgery affect your bowel function in the long run, or will it heal up without issue? 

      Your comment about the existence of a medication not necessarily translating into GETTING the drug resonated with me. Some of my friends and family was so thrilled to read this years' New Yorker article about immune therapies. It was a bit painful in some ways, as we all know that miraculous results weren't always the norm, and that it's not quite as simple as just 'ordering up' a treatment that might be available in a phase II trial, for example!

      But: I pray that we will reap the benefits of the hard work of those in the lab, and that you will be among them.

      Best,

      Ursula

        • May 22, 2012 at 12:44 pm
        benp
        Participant

        Thanks Ursula!

        I think the bowel function will (has!) return to normal. I know what you mean about articles like the one in the New Yorker… people read these and think that a cure is more likely than not for a single treatment. It feels very uncomfortable correcting them, so usually I just leave it.

        Good luck to you too!

        Ben.

        • May 22, 2012 at 12:44 pm
        benp
        Participant

        Thanks Ursula!

        I think the bowel function will (has!) return to normal. I know what you mean about articles like the one in the New Yorker… people read these and think that a cure is more likely than not for a single treatment. It feels very uncomfortable correcting them, so usually I just leave it.

        Good luck to you too!

        Ben.

        • May 22, 2012 at 12:44 pm
        benp
        Participant

        Thanks Ursula!

        I think the bowel function will (has!) return to normal. I know what you mean about articles like the one in the New Yorker… people read these and think that a cure is more likely than not for a single treatment. It feels very uncomfortable correcting them, so usually I just leave it.

        Good luck to you too!

        Ben.

      • May 21, 2012 at 5:37 pm
      UrsulaZ
      Participant

      hi Ben — I'm newish here, but always enjoy your posts. Thanks for the update. 

      Do you think the bowel surgery affect your bowel function in the long run, or will it heal up without issue? 

      Your comment about the existence of a medication not necessarily translating into GETTING the drug resonated with me. Some of my friends and family was so thrilled to read this years' New Yorker article about immune therapies. It was a bit painful in some ways, as we all know that miraculous results weren't always the norm, and that it's not quite as simple as just 'ordering up' a treatment that might be available in a phase II trial, for example!

      But: I pray that we will reap the benefits of the hard work of those in the lab, and that you will be among them.

      Best,

      Ursula

      • May 21, 2012 at 5:37 pm
      UrsulaZ
      Participant

      hi Ben — I'm newish here, but always enjoy your posts. Thanks for the update. 

      Do you think the bowel surgery affect your bowel function in the long run, or will it heal up without issue? 

      Your comment about the existence of a medication not necessarily translating into GETTING the drug resonated with me. Some of my friends and family was so thrilled to read this years' New Yorker article about immune therapies. It was a bit painful in some ways, as we all know that miraculous results weren't always the norm, and that it's not quite as simple as just 'ordering up' a treatment that might be available in a phase II trial, for example!

      But: I pray that we will reap the benefits of the hard work of those in the lab, and that you will be among them.

      Best,

      Ursula

      • May 21, 2012 at 6:49 pm
      Eileen L
      Participant
      Ben, I am currently in the Roche/Genentech BrAf/Mek inhibitor trial. I believe there is an arm of the trial for folks who have been on Braf inhibitors alone and have progressed. If you are only on the Braf inhibitor currently you may qualify.

      Good luck moving forward!
      Eileen

        • May 22, 2012 at 12:36 pm
        benp
        Participant

        Thanks Eileen, I'll look into it. I think the GSK version of this study is currently closed, at least for prior use of a BRAF inhibitor.

        • May 22, 2012 at 5:24 pm
        mommydog
        Participant
        My husband was on the GSK b-raf trial with randomized MEK ( he had the highest dosage) and after being NED after nine months developed resistance to the drug or drugs, and developed several brain mets, had two craniotomies and has lost the use of the left side of his body.
        He is now having Yervoy infusions and is taking Zelboraf. Too early to see if anything is working. His onc at Ucsf had a patient who was not successful on the gsk braf inhibitor, but responded to zelboraf. Who knows.
        • May 22, 2012 at 5:24 pm
        mommydog
        Participant
        My husband was on the GSK b-raf trial with randomized MEK ( he had the highest dosage) and after being NED after nine months developed resistance to the drug or drugs, and developed several brain mets, had two craniotomies and has lost the use of the left side of his body.
        He is now having Yervoy infusions and is taking Zelboraf. Too early to see if anything is working. His onc at Ucsf had a patient who was not successful on the gsk braf inhibitor, but responded to zelboraf. Who knows.
        • May 28, 2012 at 9:04 am
        benp
        Participant

        I'm really sorry to hear of what your husband has been through, and hope that the current therapy holds a more durable response. It seems really strange that one BRAFi could work and not the other (but it can be good!). I'd love to know how your husband goes on Zelbo.

        Good luck, 

        Ben.

        • May 28, 2012 at 9:04 am
        benp
        Participant

        I'm really sorry to hear of what your husband has been through, and hope that the current therapy holds a more durable response. It seems really strange that one BRAFi could work and not the other (but it can be good!). I'd love to know how your husband goes on Zelbo.

        Good luck, 

        Ben.

        • May 28, 2012 at 9:04 am
        benp
        Participant

        I'm really sorry to hear of what your husband has been through, and hope that the current therapy holds a more durable response. It seems really strange that one BRAFi could work and not the other (but it can be good!). I'd love to know how your husband goes on Zelbo.

        Good luck, 

        Ben.

        • May 22, 2012 at 5:24 pm
        mommydog
        Participant
        My husband was on the GSK b-raf trial with randomized MEK ( he had the highest dosage) and after being NED after nine months developed resistance to the drug or drugs, and developed several brain mets, had two craniotomies and has lost the use of the left side of his body.
        He is now having Yervoy infusions and is taking Zelboraf. Too early to see if anything is working. His onc at Ucsf had a patient who was not successful on the gsk braf inhibitor, but responded to zelboraf. Who knows.
        • May 22, 2012 at 12:36 pm
        benp
        Participant

        Thanks Eileen, I'll look into it. I think the GSK version of this study is currently closed, at least for prior use of a BRAF inhibitor.

        • May 22, 2012 at 12:36 pm
        benp
        Participant

        Thanks Eileen, I'll look into it. I think the GSK version of this study is currently closed, at least for prior use of a BRAF inhibitor.

      • May 21, 2012 at 6:49 pm
      Eileen L
      Participant
      Ben, I am currently in the Roche/Genentech BrAf/Mek inhibitor trial. I believe there is an arm of the trial for folks who have been on Braf inhibitors alone and have progressed. If you are only on the Braf inhibitor currently you may qualify.

      Good luck moving forward!
      Eileen

      • May 21, 2012 at 6:49 pm
      Eileen L
      Participant
      Ben, I am currently in the Roche/Genentech BrAf/Mek inhibitor trial. I believe there is an arm of the trial for folks who have been on Braf inhibitors alone and have progressed. If you are only on the Braf inhibitor currently you may qualify.

      Good luck moving forward!
      Eileen

      • May 23, 2012 at 6:27 pm
      Jin
      Participant

      Hello Ben,

      All very best to you. 

      My husband, Chris, was on a trial for the GSK Braf inhibitor by itself.  Did well for a year and then his last scans showed some progression.  He was immediately put off the trial and could not continue with the GSK drug.  I'm wondering if you are still on the Braf/Mek trial or if you are getting "compassionate use" of the GSK drug somehow.  Chris is currently taking Zelboraf but is getting joint pain that is becoming intolerable.  We'd love to get him back on the GSK drug in the hope that it will still hold things back for awhile. 

      Many thanks,

      Jan

        • May 28, 2012 at 9:01 am
        benp
        Participant

        Hi Jan, 

        I was not actually on the combo trial, but rather just the BRAF drug by itself. I have been pulled from the trial, though will be continuing on the drug, I assume through compassionate use. 

        Sorry to hear about the joint pain. The side effects for Zelboraf seem much worse. I'd love to hear if Chris is responding to Zelboraf after developing some resitance to GSK's BRAFi.

        Thanks, 

        Ben.

        • May 28, 2012 at 9:01 am
        benp
        Participant

        Hi Jan, 

        I was not actually on the combo trial, but rather just the BRAF drug by itself. I have been pulled from the trial, though will be continuing on the drug, I assume through compassionate use. 

        Sorry to hear about the joint pain. The side effects for Zelboraf seem much worse. I'd love to hear if Chris is responding to Zelboraf after developing some resitance to GSK's BRAFi.

        Thanks, 

        Ben.

        • May 28, 2012 at 9:01 am
        benp
        Participant

        Hi Jan, 

        I was not actually on the combo trial, but rather just the BRAF drug by itself. I have been pulled from the trial, though will be continuing on the drug, I assume through compassionate use. 

        Sorry to hear about the joint pain. The side effects for Zelboraf seem much worse. I'd love to hear if Chris is responding to Zelboraf after developing some resitance to GSK's BRAFi.

        Thanks, 

        Ben.

      • May 23, 2012 at 6:27 pm
      Jin
      Participant

      Hello Ben,

      All very best to you. 

      My husband, Chris, was on a trial for the GSK Braf inhibitor by itself.  Did well for a year and then his last scans showed some progression.  He was immediately put off the trial and could not continue with the GSK drug.  I'm wondering if you are still on the Braf/Mek trial or if you are getting "compassionate use" of the GSK drug somehow.  Chris is currently taking Zelboraf but is getting joint pain that is becoming intolerable.  We'd love to get him back on the GSK drug in the hope that it will still hold things back for awhile. 

      Many thanks,

      Jan

      • May 23, 2012 at 6:27 pm
      Jin
      Participant

      Hello Ben,

      All very best to you. 

      My husband, Chris, was on a trial for the GSK Braf inhibitor by itself.  Did well for a year and then his last scans showed some progression.  He was immediately put off the trial and could not continue with the GSK drug.  I'm wondering if you are still on the Braf/Mek trial or if you are getting "compassionate use" of the GSK drug somehow.  Chris is currently taking Zelboraf but is getting joint pain that is becoming intolerable.  We'd love to get him back on the GSK drug in the hope that it will still hold things back for awhile. 

      Many thanks,

      Jan

      • May 28, 2012 at 5:22 pm
      Jin
      Participant

      Hi Ben,

      Thanks so much for your reply.  I'm thinking you and Chris were on the same trial.  He was at UCSF so maybe different locations but same trial.  I so hope that you can get compassionate use of the GSK drug.  We've tried everything.  UCSF says it's not available.  GSK says it's not available.  So, would love to know if you are able to get it.  So far (two weeks in) Chris has had a lot more joint pain on Zelboraf but it seems to be shifting around to different places and some of it has vanished.  For the last three days he's been running a fever (he had the same with the GSK drug).  Fever should end soon if it's like the GSK drug.  We're hoping that's an indication it's working.  Hmmmm.

      He also had his first infusion of Yervoy a week ago. 

      We're really hoping to get him on a Pd-1 or PD-L1 trial if his brain can show 8 wks stable at some point.  So far, haven't found any trials that allow active brain mets and we've been looking everywhere.  I have heard rumors one may open in a few months.  He had Gamma Knife three weeks ago for 14 very small mets in his brain. 

      I'm not sure why I'm writing all this to you.  Something connected.  Please don't feel a need to respond if you don't want to or have the time.  I mean it.  I'll let you know if we find a new trial that seems interesting.  If it's of interest my e-mail is:  janfblack@comcast.net

      This is a rocky trail we're on but we have great companions and the vistas are extraordinary.

      Jan

       

       

      • May 28, 2012 at 5:22 pm
      Jin
      Participant

      Hi Ben,

      Thanks so much for your reply.  I'm thinking you and Chris were on the same trial.  He was at UCSF so maybe different locations but same trial.  I so hope that you can get compassionate use of the GSK drug.  We've tried everything.  UCSF says it's not available.  GSK says it's not available.  So, would love to know if you are able to get it.  So far (two weeks in) Chris has had a lot more joint pain on Zelboraf but it seems to be shifting around to different places and some of it has vanished.  For the last three days he's been running a fever (he had the same with the GSK drug).  Fever should end soon if it's like the GSK drug.  We're hoping that's an indication it's working.  Hmmmm.

      He also had his first infusion of Yervoy a week ago. 

      We're really hoping to get him on a Pd-1 or PD-L1 trial if his brain can show 8 wks stable at some point.  So far, haven't found any trials that allow active brain mets and we've been looking everywhere.  I have heard rumors one may open in a few months.  He had Gamma Knife three weeks ago for 14 very small mets in his brain. 

      I'm not sure why I'm writing all this to you.  Something connected.  Please don't feel a need to respond if you don't want to or have the time.  I mean it.  I'll let you know if we find a new trial that seems interesting.  If it's of interest my e-mail is:  janfblack@comcast.net

      This is a rocky trail we're on but we have great companions and the vistas are extraordinary.

      Jan

       

       

      • May 28, 2012 at 5:22 pm
      Jin
      Participant

      Hi Ben,

      Thanks so much for your reply.  I'm thinking you and Chris were on the same trial.  He was at UCSF so maybe different locations but same trial.  I so hope that you can get compassionate use of the GSK drug.  We've tried everything.  UCSF says it's not available.  GSK says it's not available.  So, would love to know if you are able to get it.  So far (two weeks in) Chris has had a lot more joint pain on Zelboraf but it seems to be shifting around to different places and some of it has vanished.  For the last three days he's been running a fever (he had the same with the GSK drug).  Fever should end soon if it's like the GSK drug.  We're hoping that's an indication it's working.  Hmmmm.

      He also had his first infusion of Yervoy a week ago. 

      We're really hoping to get him on a Pd-1 or PD-L1 trial if his brain can show 8 wks stable at some point.  So far, haven't found any trials that allow active brain mets and we've been looking everywhere.  I have heard rumors one may open in a few months.  He had Gamma Knife three weeks ago for 14 very small mets in his brain. 

      I'm not sure why I'm writing all this to you.  Something connected.  Please don't feel a need to respond if you don't want to or have the time.  I mean it.  I'll let you know if we find a new trial that seems interesting.  If it's of interest my e-mail is:  janfblack@comcast.net

      This is a rocky trail we're on but we have great companions and the vistas are extraordinary.

      Jan

       

       

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