Doing great! Should I stay on Keytruda or come off?!?!

How often is your treatment, still every 3 weeks?  My husband is doing great right now, but one fear is that IF recurrance and he starts Keytruda it is long term every 3 weeks….has that been your schedule??

Rita

How often is your treatment, still every 3 weeks?  My husband is doing great right now, but one fear is that IF recurrance and he starts Keytruda it is long term every 3 weeks….has that been your schedule??

Rita

How often is your treatment, still every 3 weeks?  My husband is doing great right now, but one fear is that IF recurrance and he starts Keytruda it is long term every 3 weeks….has that been your schedule??

Rita

Hi Laurie,

Congrats on the scans and positive life events.  I'd like to say you missed some earth shattering news from ASCO that will make your decision easier but to my knowledge there really hasn't been any data released that makes the decision clearer.  Thank you for the info on the 61 patients.  That's the information many of us have been looking for.  The only thing even close  I've been able to find is during a conversation I had with Dr. Jeffrey Weber when he told me of his 14 responders in his first nivo trial none have recurred.  I will share with you when I came up to the end of my 2 year trial I spoke with Dr. Salama at Duke, Dr. Weber at Moffitt, and Dr. Wolchok and MSK and they all recommended stopping treatment.  I would venture to say most experts are leaning that way but there are some in Hodi's camp that are still recommending more longterm use.  Next month will be my one year anniversary off treatment and so far so good.  Of course you know you're only doing as good as your next scan which for me will be in a few weeks.

Your post timing is interesting because today I reached out to Dr. Weber for some help.  I'm attempting to get back my FAA medical clearance to return to my previous flying job.  The FAA turned down my first request so Dr. Weber has agreed to help me put together a package to try and reverse the decision.  I think in order for us to be successful we need to present a strong case that folks like you and I who have reached the 3 year mark are highly unlikely to recur.  Hopefully he has the hard data to support that conclusion.  I'll definitely report back with what we talk about.

Great to hear you are doing well. 

Brian

Hi Laurie,

Congrats on the scans and positive life events.  I'd like to say you missed some earth shattering news from ASCO that will make your decision easier but to my knowledge there really hasn't been any data released that makes the decision clearer.  Thank you for the info on the 61 patients.  That's the information many of us have been looking for.  The only thing even close  I've been able to find is during a conversation I had with Dr. Jeffrey Weber when he told me of his 14 responders in his first nivo trial none have recurred.  I will share with you when I came up to the end of my 2 year trial I spoke with Dr. Salama at Duke, Dr. Weber at Moffitt, and Dr. Wolchok and MSK and they all recommended stopping treatment.  I would venture to say most experts are leaning that way but there are some in Hodi's camp that are still recommending more longterm use.  Next month will be my one year anniversary off treatment and so far so good.  Of course you know you're only doing as good as your next scan which for me will be in a few weeks.

Your post timing is interesting because today I reached out to Dr. Weber for some help.  I'm attempting to get back my FAA medical clearance to return to my previous flying job.  The FAA turned down my first request so Dr. Weber has agreed to help me put together a package to try and reverse the decision.  I think in order for us to be successful we need to present a strong case that folks like you and I who have reached the 3 year mark are highly unlikely to recur.  Hopefully he has the hard data to support that conclusion.  I'll definitely report back with what we talk about.

Great to hear you are doing well. 

Brian

Hi Laurie,

Congrats on the scans and positive life events.  I'd like to say you missed some earth shattering news from ASCO that will make your decision easier but to my knowledge there really hasn't been any data released that makes the decision clearer.  Thank you for the info on the 61 patients.  That's the information many of us have been looking for.  The only thing even close  I've been able to find is during a conversation I had with Dr. Jeffrey Weber when he told me of his 14 responders in his first nivo trial none have recurred.  I will share with you when I came up to the end of my 2 year trial I spoke with Dr. Salama at Duke, Dr. Weber at Moffitt, and Dr. Wolchok and MSK and they all recommended stopping treatment.  I would venture to say most experts are leaning that way but there are some in Hodi's camp that are still recommending more longterm use.  Next month will be my one year anniversary off treatment and so far so good.  Of course you know you're only doing as good as your next scan which for me will be in a few weeks.

Your post timing is interesting because today I reached out to Dr. Weber for some help.  I'm attempting to get back my FAA medical clearance to return to my previous flying job.  The FAA turned down my first request so Dr. Weber has agreed to help me put together a package to try and reverse the decision.  I think in order for us to be successful we need to present a strong case that folks like you and I who have reached the 3 year mark are highly unlikely to recur.  Hopefully he has the hard data to support that conclusion.  I'll definitely report back with what we talk about.

Great to hear you are doing well. 

Brian

Hi Laurie, I have a link with Dr. Weber and Dr. Jason Luke talking about this topic. Hope it helps!!! Ed  https://www.youtube.com/watch?v=aSXv02OdoO4

Hi Laurie, I have a link with Dr. Weber and Dr. Jason Luke talking about this topic. Hope it helps!!! Ed  https://www.youtube.com/watch?v=aSXv02OdoO4

Hi Laurie, I have a link with Dr. Weber and Dr. Jason Luke talking about this topic. Hope it helps!!! Ed  https://www.youtube.com/watch?v=aSXv02OdoO4

You have a treatment that is working for you.

You and your doctors find this a good way forward for you.

Yet now,even in the face of success ,you are unsure.

Do not overthink this.

Groupthink is not important here; your individual results are.

It blows me away when people are so wrapped up in the internet that they refuse to acknowledge their own personal  accomplishments  without being patted on the ass by social media.

YOU and your doctors found a workable solution for your disease; why can you not accept that?

Your disease is abated right now..  

What possible words could top that?

Work your individual problem with your doctors………………no one here has a magic wand to make your remission any better.

I see no reason for you to be bitching, whining or complaining or really even questioning.

You have had a response and now you want someone to give you a warranty?

Not gonna happen.

Charlie S

You have a treatment that is working for you.

You and your doctors find this a good way forward for you.

Yet now,even in the face of success ,you are unsure.

Do not overthink this.

Groupthink is not important here; your individual results are.

It blows me away when people are so wrapped up in the internet that they refuse to acknowledge their own personal  accomplishments  without being patted on the ass by social media.

YOU and your doctors found a workable solution for your disease; why can you not accept that?

Your disease is abated right now..  

What possible words could top that?

Work your individual problem with your doctors………………no one here has a magic wand to make your remission any better.

I see no reason for you to be bitching, whining or complaining or really even questioning.

You have had a response and now you want someone to give you a warranty?

Not gonna happen.

Charlie S

You have a treatment that is working for you.

You and your doctors find this a good way forward for you.

Yet now,even in the face of success ,you are unsure.

Do not overthink this.

Groupthink is not important here; your individual results are.

It blows me away when people are so wrapped up in the internet that they refuse to acknowledge their own personal  accomplishments  without being patted on the ass by social media.

YOU and your doctors found a workable solution for your disease; why can you not accept that?

Your disease is abated right now..  

What possible words could top that?

Work your individual problem with your doctors………………no one here has a magic wand to make your remission any better.

I see no reason for you to be bitching, whining or complaining or really even questioning.

You have had a response and now you want someone to give you a warranty?

Not gonna happen.

Charlie S

Hey Laurie,

Glad you are doing so well and busy with living. There are several reports on my blog regarding various experts discussing the question you pose – How much anti-PD1 do we need?  You can use the search bubble if you like. Personally, I took nivo/opdivo for 2 1/2 years…my last dose was in June of 2013. After brain mets (zapped with SRS) and a lung met (surgically removed) followed by my years of nivo….I remain NED today. Additionally, Dr. Weber was my oncologist throughout and told me that he thought the length of administration in the trial (meaning the 2 1/2 years) was probably too long….for what it's worth. His theory (along with other melanoma experts) is that once a "certain" amount of drug is given, maximal benefit will be achieved…additional dosing will profer no additional success and only puts folks at risk for additional side effects. Of course the zillion dollar question is -What exactly is that 'certain' amount?  Also pertinent to this decision…is the growing body of evidence that once folks have made it three years progression free…the odds of their recurring drops substantially. There are slides with Kaplan meier curves demonstrating that on my blog. So….that's what I've got as to your question.

As to the other tadah that is threatening this thread. While I agree that Charlie's comments were harsh….Have none of us in a moment of stress not lashed out when perhaps we should not have? Clearly…all of us here can speak out in any way we feel…the good, the bad, the cheering, the frustrated. That is part of what this forum is about.  I've certainly been knocked around on here on occasion…but….I figure I don't always know what another person may be going through…even when I may not particularly like how I am "treated" in that moment. I certainly feel we all do better when supporting each other. But, like Brian said…. I am certain you, Laurie, are a big girl and can handle a great deal. I have a strong hunch (and since you've not been on the forum much lately…though many of the rest of us have….you may not be aware) that Charlie is going through a tough time. He let us know that he recurred…significantly. Re-did IL2. And then "quit"….his terminology. And I don't think he is a quitter. So, I guess what I'm saying is that though folks are not always on their best behavior (though we should strive to be) we have to support each other and realize that we cannot always know what might be behind their comments.

So, Laurie. Hang tough. March forward in the way you feel best. I wish you well. Celeste

Hey Laurie,

Glad you are doing so well and busy with living. There are several reports on my blog regarding various experts discussing the question you pose – How much anti-PD1 do we need?  You can use the search bubble if you like. Personally, I took nivo/opdivo for 2 1/2 years…my last dose was in June of 2013. After brain mets (zapped with SRS) and a lung met (surgically removed) followed by my years of nivo….I remain NED today. Additionally, Dr. Weber was my oncologist throughout and told me that he thought the length of administration in the trial (meaning the 2 1/2 years) was probably too long….for what it's worth. His theory (along with other melanoma experts) is that once a "certain" amount of drug is given, maximal benefit will be achieved…additional dosing will profer no additional success and only puts folks at risk for additional side effects. Of course the zillion dollar question is -What exactly is that 'certain' amount?  Also pertinent to this decision…is the growing body of evidence that once folks have made it three years progression free…the odds of their recurring drops substantially. There are slides with Kaplan meier curves demonstrating that on my blog. So….that's what I've got as to your question.

As to the other tadah that is threatening this thread. While I agree that Charlie's comments were harsh….Have none of us in a moment of stress not lashed out when perhaps we should not have? Clearly…all of us here can speak out in any way we feel…the good, the bad, the cheering, the frustrated. That is part of what this forum is about.  I've certainly been knocked around on here on occasion…but….I figure I don't always know what another person may be going through…even when I may not particularly like how I am "treated" in that moment. I certainly feel we all do better when supporting each other. But, like Brian said…. I am certain you, Laurie, are a big girl and can handle a great deal. I have a strong hunch (and since you've not been on the forum much lately…though many of the rest of us have….you may not be aware) that Charlie is going through a tough time. He let us know that he recurred…significantly. Re-did IL2. And then "quit"….his terminology. And I don't think he is a quitter. So, I guess what I'm saying is that though folks are not always on their best behavior (though we should strive to be) we have to support each other and realize that we cannot always know what might be behind their comments.

So, Laurie. Hang tough. March forward in the way you feel best. I wish you well. Celeste

Hey Laurie,

Glad you are doing so well and busy with living. There are several reports on my blog regarding various experts discussing the question you pose – How much anti-PD1 do we need?  You can use the search bubble if you like. Personally, I took nivo/opdivo for 2 1/2 years…my last dose was in June of 2013. After brain mets (zapped with SRS) and a lung met (surgically removed) followed by my years of nivo….I remain NED today. Additionally, Dr. Weber was my oncologist throughout and told me that he thought the length of administration in the trial (meaning the 2 1/2 years) was probably too long….for what it's worth. His theory (along with other melanoma experts) is that once a "certain" amount of drug is given, maximal benefit will be achieved…additional dosing will profer no additional success and only puts folks at risk for additional side effects. Of course the zillion dollar question is -What exactly is that 'certain' amount?  Also pertinent to this decision…is the growing body of evidence that once folks have made it three years progression free…the odds of their recurring drops substantially. There are slides with Kaplan meier curves demonstrating that on my blog. So….that's what I've got as to your question.

As to the other tadah that is threatening this thread. While I agree that Charlie's comments were harsh….Have none of us in a moment of stress not lashed out when perhaps we should not have? Clearly…all of us here can speak out in any way we feel…the good, the bad, the cheering, the frustrated. That is part of what this forum is about.  I've certainly been knocked around on here on occasion…but….I figure I don't always know what another person may be going through…even when I may not particularly like how I am "treated" in that moment. I certainly feel we all do better when supporting each other. But, like Brian said…. I am certain you, Laurie, are a big girl and can handle a great deal. I have a strong hunch (and since you've not been on the forum much lately…though many of the rest of us have….you may not be aware) that Charlie is going through a tough time. He let us know that he recurred…significantly. Re-did IL2. And then "quit"….his terminology. And I don't think he is a quitter. So, I guess what I'm saying is that though folks are not always on their best behavior (though we should strive to be) we have to support each other and realize that we cannot always know what might be behind their comments.

So, Laurie. Hang tough. March forward in the way you feel best. I wish you well. Celeste