Jin

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:  [email protected]

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

Jan

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:  [email protected]

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

Jan

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:  [email protected]

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

Jan

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

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

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