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

Forums General Melanoma Community Doing great! Should I stay on Keytruda or come off?!?!

  • Post
    sweetaugust
    Participant

    Hi guys,

    I have been very busy in the past month and a half and haven't been on the site.  I moved and now just started a new job.  All is great and I am enjoying life and the nice weather.

    I just scanned again and found out today that all is perfect.  I feel so lucky!  But again that questions pops up….how much of Keytruda is too much?

    I heard from my doctors that they have found that of 61 patients that have come off of Keytruda, only 2 reoccurred.  Those are great odds right?!?!  Seems as though the drug is doing a great job of re-training the body to fight off Melanoma.

    So what are your thoughts and what have you found?  And I apologize if you all have already discussed this in the weeks following the ASCO meeting, I missed the conversations and am just trying to feel out peoples thoughts.

    Thanks so much and all the best to you fighters out there,

    Laurie

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  • Replies
      Rita and Charles
      Participant

      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

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        sweetaugust
        Participant

        Hi Rita,

        Yes, still 10mg of Keytruda every 3 weeks.  Started the clinical trial for Keytruda in Oct of 2012.  

        So glad your husband is doing great!  Laurie

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        sweetaugust
        Participant

        Hi Rita,

        Yes, still 10mg of Keytruda every 3 weeks.  Started the clinical trial for Keytruda in Oct of 2012.  

        So glad your husband is doing great!  Laurie

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        sweetaugust
        Participant

        Hi Rita,

        Yes, still 10mg of Keytruda every 3 weeks.  Started the clinical trial for Keytruda in Oct of 2012.  

        So glad your husband is doing great!  Laurie

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      Rita and Charles
      Participant

      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

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      Rita and Charles
      Participant

      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

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      BrianP
      Participant

      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

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        sweetaugust
        Participant

        Hi Brian,

        So great to hear from you.  Thank you for your information.  I've definitely been out of the loop since I haven't been on the site for a bit.  

        So interesting to hear that most doctors are fine with patients coming off the drug.  I too feel that is the right decision.  Just have to wait until I get a chance to talk it out with Hodi.  

        Best of luck with the FAA.  Let us know if you get back flying.  :)  Laurie

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        sweetaugust
        Participant

        Hi Brian,

        So great to hear from you.  Thank you for your information.  I've definitely been out of the loop since I haven't been on the site for a bit.  

        So interesting to hear that most doctors are fine with patients coming off the drug.  I too feel that is the right decision.  Just have to wait until I get a chance to talk it out with Hodi.  

        Best of luck with the FAA.  Let us know if you get back flying.  :)  Laurie

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        sweetaugust
        Participant

        Hi Brian,

        So great to hear from you.  Thank you for your information.  I've definitely been out of the loop since I haven't been on the site for a bit.  

        So interesting to hear that most doctors are fine with patients coming off the drug.  I too feel that is the right decision.  Just have to wait until I get a chance to talk it out with Hodi.  

        Best of luck with the FAA.  Let us know if you get back flying.  :)  Laurie

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      BrianP
      Participant

      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

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      BrianP
      Participant

      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

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      ed williams
      Participant

      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

       

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      ed williams
      Participant

      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

       

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      ed williams
      Participant

      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

       

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        sweetaugust
        Participant

        Thank you Ed!  That was very helpful.  I really appreciate it.  

        I'm starting to feel that coming off Pembro/Keytruda is a good option for me….after being on it for almost 4 years.   

        These decisions we face on a daily basis are so tough.  We are all fighting for life and hoping to find the correct cocktail that will reverse this beast.   I feel so grateful for all that have contributed to finding a way to give us a chance.

        All the best to you, Laurie

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        sweetaugust
        Participant

        Thank you Ed!  That was very helpful.  I really appreciate it.  

        I'm starting to feel that coming off Pembro/Keytruda is a good option for me….after being on it for almost 4 years.   

        These decisions we face on a daily basis are so tough.  We are all fighting for life and hoping to find the correct cocktail that will reverse this beast.   I feel so grateful for all that have contributed to finding a way to give us a chance.

        All the best to you, Laurie

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        sweetaugust
        Participant

        Thank you Ed!  That was very helpful.  I really appreciate it.  

        I'm starting to feel that coming off Pembro/Keytruda is a good option for me….after being on it for almost 4 years.   

        These decisions we face on a daily basis are so tough.  We are all fighting for life and hoping to find the correct cocktail that will reverse this beast.   I feel so grateful for all that have contributed to finding a way to give us a chance.

        All the best to you, Laurie

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        ed williams
        Participant

        Laurie, there is another presentation by Dr. James Allison that is worth listening to. At the 21min mark he gets into data that supports when we might be in the clear to stop treatments. Best Wishes!!!Ed https://www.youtube.com/watch?v=yax499WfPTg

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        ed williams
        Participant

        Laurie, there is another presentation by Dr. James Allison that is worth listening to. At the 21min mark he gets into data that supports when we might be in the clear to stop treatments. Best Wishes!!!Ed https://www.youtube.com/watch?v=yax499WfPTg

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        ed williams
        Participant

        Laurie, there is another presentation by Dr. James Allison that is worth listening to. At the 21min mark he gets into data that supports when we might be in the clear to stop treatments. Best Wishes!!!Ed https://www.youtube.com/watch?v=yax499WfPTg

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      Charlie S
      Participant

      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

       

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      Charlie S
      Participant

      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

       

      Loading spinner
      Charlie S
      Participant

      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

       

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        Patrisa
        Participant

        This is extremely rude and unnecessary…

         

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        Patrisa
        Participant

        This is extremely rude and unnecessary…

         

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        Patrisa
        Participant

        This is extremely rude and unnecessary…

         

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        BrianP
        Participant

        Charlie,

        I love you man but you can really be an ass sometimes.  I'm sure that's not the first time you've been told that.  Where in Laura's post is she "bitching, whining, or complaining".  Can you give me one example?  She's probably one of the most positive members of this board.  Is she questioning?  Yes.  Isn't that why this board exist?  I was very grateful for Laura's post for the information she shared about the 61 patients.  Whether you realize it or not, the decision to continue or discontinue Anti-PD1 is one of the biggest decisions responders have to make.  The data simply isn't mature enough for patients to make a knowledgeable decision.  That's why this board is so great in those circumstances.  We talk amongst ourselves, share information, find out what we are hearing from each others docs, and support each other in our decisions.  No one can make that decison for Laura.  She's a big girl and knows that but we can certainly help her sort things outs. 

        Brian

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        BrianP
        Participant

        Charlie,

        I love you man but you can really be an ass sometimes.  I'm sure that's not the first time you've been told that.  Where in Laura's post is she "bitching, whining, or complaining".  Can you give me one example?  She's probably one of the most positive members of this board.  Is she questioning?  Yes.  Isn't that why this board exist?  I was very grateful for Laura's post for the information she shared about the 61 patients.  Whether you realize it or not, the decision to continue or discontinue Anti-PD1 is one of the biggest decisions responders have to make.  The data simply isn't mature enough for patients to make a knowledgeable decision.  That's why this board is so great in those circumstances.  We talk amongst ourselves, share information, find out what we are hearing from each others docs, and support each other in our decisions.  No one can make that decison for Laura.  She's a big girl and knows that but we can certainly help her sort things outs. 

        Brian

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        BrianP
        Participant

        Charlie,

        I love you man but you can really be an ass sometimes.  I'm sure that's not the first time you've been told that.  Where in Laura's post is she "bitching, whining, or complaining".  Can you give me one example?  She's probably one of the most positive members of this board.  Is she questioning?  Yes.  Isn't that why this board exist?  I was very grateful for Laura's post for the information she shared about the 61 patients.  Whether you realize it or not, the decision to continue or discontinue Anti-PD1 is one of the biggest decisions responders have to make.  The data simply isn't mature enough for patients to make a knowledgeable decision.  That's why this board is so great in those circumstances.  We talk amongst ourselves, share information, find out what we are hearing from each others docs, and support each other in our decisions.  No one can make that decison for Laura.  She's a big girl and knows that but we can certainly help her sort things outs. 

        Brian

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        WithinMySkin
        Participant
        I have to second what Brian worded so eloquently. You need to put the gloves down, Charlie, because you’re hitting the wrong target. We all have questions and we all need to bounce ideas off each other. There are people on here that know more than most oncologists about melanoma. Laurie wasn’t even close to whining or complaining, but quite frankly, SO WHAT if she was?? This board is for us to find support and guidance. We all have good days and bad days. There have been days where this board got me out of bed in the morning…it got me only as far as the couch, but by God it got me out of bed. If you want a punching bag, aim at the cancer we’re all fighting rather than a fellow warrior who’s asking for advice.

        Lauren

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        WithinMySkin
        Participant
        I have to second what Brian worded so eloquently. You need to put the gloves down, Charlie, because you’re hitting the wrong target. We all have questions and we all need to bounce ideas off each other. There are people on here that know more than most oncologists about melanoma. Laurie wasn’t even close to whining or complaining, but quite frankly, SO WHAT if she was?? This board is for us to find support and guidance. We all have good days and bad days. There have been days where this board got me out of bed in the morning…it got me only as far as the couch, but by God it got me out of bed. If you want a punching bag, aim at the cancer we’re all fighting rather than a fellow warrior who’s asking for advice.

        Lauren

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        WithinMySkin
        Participant
        I have to second what Brian worded so eloquently. You need to put the gloves down, Charlie, because you’re hitting the wrong target. We all have questions and we all need to bounce ideas off each other. There are people on here that know more than most oncologists about melanoma. Laurie wasn’t even close to whining or complaining, but quite frankly, SO WHAT if she was?? This board is for us to find support and guidance. We all have good days and bad days. There have been days where this board got me out of bed in the morning…it got me only as far as the couch, but by God it got me out of bed. If you want a punching bag, aim at the cancer we’re all fighting rather than a fellow warrior who’s asking for advice.

        Lauren

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      Bubbles
      Participant

      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

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      Bubbles
      Participant

      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

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        BrianP
        Participant

        Well said Celeste.  If MPIP had an edit feature I would have removed my first two sentences after I had time to think about it more.  Not sure what all Charlie is going through these days but we can all get a little grumpy even under the best of circumstances.  Besides even if Charlie has been called an ass before I'm sure he's been called a sweetheart many more times.

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        BrianP
        Participant

        Well said Celeste.  If MPIP had an edit feature I would have removed my first two sentences after I had time to think about it more.  Not sure what all Charlie is going through these days but we can all get a little grumpy even under the best of circumstances.  Besides even if Charlie has been called an ass before I'm sure he's been called a sweetheart many more times.

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        BrianP
        Participant

        Well said Celeste.  If MPIP had an edit feature I would have removed my first two sentences after I had time to think about it more.  Not sure what all Charlie is going through these days but we can all get a little grumpy even under the best of circumstances.  Besides even if Charlie has been called an ass before I'm sure he's been called a sweetheart many more times.

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      Bubbles
      Participant

      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

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