bradcope1

Thank you all, we are leaning this way as well. 

Thank you all, we are leaning this way as well. 

Thank you all, we are leaning this way as well. 

Thank you both so much. The webcast was extremely valuable!!!

Thank you both so much. The webcast was extremely valuable!!!

Thank you both so much. The webcast was extremely valuable!!!

Kim, What a remarkable story and thanks so much for sharing it with me.

What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.

The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess

On a happy note, my daughter got engaged yesterday. She has much to fight for.

Thanks again for your great advice. Brad

Kim, What a remarkable story and thanks so much for sharing it with me.

What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.

The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess

On a happy note, my daughter got engaged yesterday. She has much to fight for.

Thanks again for your great advice. Brad

Kim, What a remarkable story and thanks so much for sharing it with me.

What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.

The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess

On a happy note, my daughter got engaged yesterday. She has much to fight for.

Thanks again for your great advice. Brad

Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2. 

Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2. 

Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2. 

You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.

Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.

By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.

You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.

Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.

By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.

You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.

Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.

By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.