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How long does Keytruda treatment last?
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How long does Keytruda treatment last?

› Forums › General Melanoma Community › How long does Keytruda treatment last?

  • Post
    • April 20, 2015 at 3:31 pm
    liberty04281
    Participant
      I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
      Good luck to all of you!
    Viewing 8 reply threads
    • Replies
        • April 20, 2015 at 4:32 pm
        Julie in SoCal
        Participant

          I could be wrong (I'm not a molecular biologist) but it's my understanding that the changes it makes to your immune system last forever.  I've heard immunotherapy treatment likened to getting a software update for your immune system.  Of course Mel is always a moving target, and so it's possible for Mel to sneak out from under your immune system and pop up again if it doesn't get it all.  This is my understanding, anyway.

          Now I'm off for my second dose of Pembro this afternoon!

          Shalom!

          Julie

          • April 20, 2015 at 4:32 pm
          Julie in SoCal
          Participant

            I could be wrong (I'm not a molecular biologist) but it's my understanding that the changes it makes to your immune system last forever.  I've heard immunotherapy treatment likened to getting a software update for your immune system.  Of course Mel is always a moving target, and so it's possible for Mel to sneak out from under your immune system and pop up again if it doesn't get it all.  This is my understanding, anyway.

            Now I'm off for my second dose of Pembro this afternoon!

            Shalom!

            Julie

            • April 20, 2015 at 4:32 pm
            Julie in SoCal
            Participant

              I could be wrong (I'm not a molecular biologist) but it's my understanding that the changes it makes to your immune system last forever.  I've heard immunotherapy treatment likened to getting a software update for your immune system.  Of course Mel is always a moving target, and so it's possible for Mel to sneak out from under your immune system and pop up again if it doesn't get it all.  This is my understanding, anyway.

              Now I'm off for my second dose of Pembro this afternoon!

              Shalom!

              Julie

                • April 20, 2015 at 5:14 pm
                liberty04281
                Participant
                  Thank you for your answer, and good luck.
                  • April 20, 2015 at 5:14 pm
                  liberty04281
                  Participant
                    Thank you for your answer, and good luck.
                    • April 20, 2015 at 5:14 pm
                    liberty04281
                    Participant
                      Thank you for your answer, and good luck.
                    • April 20, 2015 at 7:31 pm
                    ed williams
                    Participant

                      Hi Anonymous, since the two drugs Keytruda and Nivolumab ( can't remember new name for it) are both fairly new on the scene the long term survival graphs from the various clinical trials are still works in progress. Which is a good thing!!!! When people respond to Pd-1 they tend to keep responding as a general rule. I am 15 months into a BMS double blind study of Ipi and Nivolumab either as a single agent or combined, and I am hoping that the graph shows a long, long X- axis for years still kicking. Wishing you the best! Ed

                      • April 20, 2015 at 7:31 pm
                      ed williams
                      Participant

                        Hi Anonymous, since the two drugs Keytruda and Nivolumab ( can't remember new name for it) are both fairly new on the scene the long term survival graphs from the various clinical trials are still works in progress. Which is a good thing!!!! When people respond to Pd-1 they tend to keep responding as a general rule. I am 15 months into a BMS double blind study of Ipi and Nivolumab either as a single agent or combined, and I am hoping that the graph shows a long, long X- axis for years still kicking. Wishing you the best! Ed

                          • April 20, 2015 at 9:21 pm
                          liberty04281
                          Participant
                            Thank you very much, wish you all the best. I will not be anonymous this time
                            • April 20, 2015 at 9:21 pm
                            liberty04281
                            Participant
                              Thank you very much, wish you all the best. I will not be anonymous this time
                              • April 20, 2015 at 9:21 pm
                              liberty04281
                              Participant
                                Thank you very much, wish you all the best. I will not be anonymous this time
                              • April 20, 2015 at 7:31 pm
                              ed williams
                              Participant

                                Hi Anonymous, since the two drugs Keytruda and Nivolumab ( can't remember new name for it) are both fairly new on the scene the long term survival graphs from the various clinical trials are still works in progress. Which is a good thing!!!! When people respond to Pd-1 they tend to keep responding as a general rule. I am 15 months into a BMS double blind study of Ipi and Nivolumab either as a single agent or combined, and I am hoping that the graph shows a long, long X- axis for years still kicking. Wishing you the best! Ed

                                • April 21, 2015 at 4:21 pm
                                sweetaugust
                                Participant

                                  Excellent question…and one that all of us here are looking for the answer to.  It is something I ask myself everyday.  I only know that I've been on it for the last 2.5 years and I am still doing great.  The plan as of now is to just keep me on this for good…as long as I stay healthy. 

                                  I have not tried any other drugs other than Keytruda and it has been working.  And we have talked about me coming off the trial and just seeing how I do…and then if the melanoma appears again…just getting me back on the Keytruda.  But, due to the new FDA approval and it's guidelines, I would be to fail the ipi to get to the Keytruda again.  So instead of doing that, we just decided it is best to keep me on Keytruda.  So I am still on the highest dose of 10mg every 3 weeks for 30 minutes.    Laurie

                                    • April 21, 2015 at 5:01 pm
                                    killmel
                                    Participant

                                      Hi Laurie,

                                       

                                      It is my understanding that if you are a "complete responder" and you decide to stop taking mk3475 on the trial, you can request Merck to put on on the "observation" status with the trial. You would then just have to have blood work & scans every 12 weeks so Merck can follow your progress.

                                      If you were to then recur, then Merck will consider putting you back on trial & taking MK3475 again. However, no guarantees, but more than likely Merck would put you back on trial & then you would resume the same dosage 10 mg every 3 wks.

                                      I would discuss this option with your doctor.I know of many people on "observation" status with this trial you are on. If you decide to discuss this option with your doctor,please post what your doctor has to say about "observation" option for your trial.

                                      Good Luck

                                      • April 21, 2015 at 5:01 pm
                                      killmel
                                      Participant

                                        Hi Laurie,

                                         

                                        It is my understanding that if you are a "complete responder" and you decide to stop taking mk3475 on the trial, you can request Merck to put on on the "observation" status with the trial. You would then just have to have blood work & scans every 12 weeks so Merck can follow your progress.

                                        If you were to then recur, then Merck will consider putting you back on trial & taking MK3475 again. However, no guarantees, but more than likely Merck would put you back on trial & then you would resume the same dosage 10 mg every 3 wks.

                                        I would discuss this option with your doctor.I know of many people on "observation" status with this trial you are on. If you decide to discuss this option with your doctor,please post what your doctor has to say about "observation" option for your trial.

                                        Good Luck

                                        • April 21, 2015 at 5:01 pm
                                        killmel
                                        Participant

                                          Hi Laurie,

                                           

                                          It is my understanding that if you are a "complete responder" and you decide to stop taking mk3475 on the trial, you can request Merck to put on on the "observation" status with the trial. You would then just have to have blood work & scans every 12 weeks so Merck can follow your progress.

                                          If you were to then recur, then Merck will consider putting you back on trial & taking MK3475 again. However, no guarantees, but more than likely Merck would put you back on trial & then you would resume the same dosage 10 mg every 3 wks.

                                          I would discuss this option with your doctor.I know of many people on "observation" status with this trial you are on. If you decide to discuss this option with your doctor,please post what your doctor has to say about "observation" option for your trial.

                                          Good Luck

                                          • April 22, 2015 at 2:07 pm
                                          sweetaugust
                                          Participant

                                            Yes!  I consider myself a complete responder.  But they consider me a partial responder…because my really bad node (the one that was the biggest and was the one that got me into the trial) will likely never go down to normal size due to the scar tissue on it from the core biopsy at the beginning of the trial and because it blew up and liquified when the drug won the battle.  A few months back they did add a paragraph to my trial contract saying that:

                                            "Second Course Phase:

                                            If you have a good response to the study drugs and stop receiving MK-3475, but then your disease begins to progress again you may be eligible to receive MK-3475 study drug.  Your study doctor will determine if you meet the study requirements for the Second Course treatment.  If you are eligible, you will restart treatment and will be retreated at the dose and dose frequency you received upon initial treatment with MK-3475." 

                                            It doesn't actually offer a guarantee that I would be allowed back on the trial though.  So hence the reason at this time we are keeping me on the trial.  Since I am not having any side effects and I am doing so well.  He said lets not rock the boat now.  They are still ironing out all the FDA rules with failing ipi to get Keytruda.  He wants me to stay the course until more is known. 

                                            But it is still a question I ask myself all the time….how much is too much and when would be the right time to stop the drug.  I WISH we knew the magic dose.

                                            Thanks, Laurie

                                            • April 22, 2015 at 2:07 pm
                                            sweetaugust
                                            Participant

                                              Yes!  I consider myself a complete responder.  But they consider me a partial responder…because my really bad node (the one that was the biggest and was the one that got me into the trial) will likely never go down to normal size due to the scar tissue on it from the core biopsy at the beginning of the trial and because it blew up and liquified when the drug won the battle.  A few months back they did add a paragraph to my trial contract saying that:

                                              "Second Course Phase:

                                              If you have a good response to the study drugs and stop receiving MK-3475, but then your disease begins to progress again you may be eligible to receive MK-3475 study drug.  Your study doctor will determine if you meet the study requirements for the Second Course treatment.  If you are eligible, you will restart treatment and will be retreated at the dose and dose frequency you received upon initial treatment with MK-3475." 

                                              It doesn't actually offer a guarantee that I would be allowed back on the trial though.  So hence the reason at this time we are keeping me on the trial.  Since I am not having any side effects and I am doing so well.  He said lets not rock the boat now.  They are still ironing out all the FDA rules with failing ipi to get Keytruda.  He wants me to stay the course until more is known. 

                                              But it is still a question I ask myself all the time….how much is too much and when would be the right time to stop the drug.  I WISH we knew the magic dose.

                                              Thanks, Laurie

                                              • April 24, 2015 at 5:42 pm
                                              palmspringswalt
                                              Participant

                                                I've had much the same experience as Laurie.

                                                I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

                                                I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

                                                My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

                                                For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

                                                 

                                                • April 24, 2015 at 5:42 pm
                                                palmspringswalt
                                                Participant

                                                  I've had much the same experience as Laurie.

                                                  I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

                                                  I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

                                                  My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

                                                  For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

                                                   

                                                  • April 24, 2015 at 5:42 pm
                                                  palmspringswalt
                                                  Participant

                                                    I've had much the same experience as Laurie.

                                                    I've been on MK-3475 for slightly over 3 years at 10 mg/kg infused every 2 weeks.

                                                    I have NED but I have had side effects.  The most recent was autoimmune hepatitis which was reversed by stopping the infusions temporarily and doing high dose prednisone therapy.  I also have constant low grade fatigue.

                                                    My doctor has also suggested staying on MK-3475 till the durability picture is a bit clearer.  Also, if I drop out I would guess my insurance company would refuse to pay for Keytruda based on my experience with them.

                                                    For the present I've been able to stay in the trial and have decided to stay in the trial.  What happens in the future I don't know! 

                                                     

                                                    • April 22, 2015 at 2:07 pm
                                                    sweetaugust
                                                    Participant

                                                      Yes!  I consider myself a complete responder.  But they consider me a partial responder…because my really bad node (the one that was the biggest and was the one that got me into the trial) will likely never go down to normal size due to the scar tissue on it from the core biopsy at the beginning of the trial and because it blew up and liquified when the drug won the battle.  A few months back they did add a paragraph to my trial contract saying that:

                                                      "Second Course Phase:

                                                      If you have a good response to the study drugs and stop receiving MK-3475, but then your disease begins to progress again you may be eligible to receive MK-3475 study drug.  Your study doctor will determine if you meet the study requirements for the Second Course treatment.  If you are eligible, you will restart treatment and will be retreated at the dose and dose frequency you received upon initial treatment with MK-3475." 

                                                      It doesn't actually offer a guarantee that I would be allowed back on the trial though.  So hence the reason at this time we are keeping me on the trial.  Since I am not having any side effects and I am doing so well.  He said lets not rock the boat now.  They are still ironing out all the FDA rules with failing ipi to get Keytruda.  He wants me to stay the course until more is known. 

                                                      But it is still a question I ask myself all the time….how much is too much and when would be the right time to stop the drug.  I WISH we knew the magic dose.

                                                      Thanks, Laurie

                                                      • July 11, 2015 at 1:49 am
                                                      Rita and Charles
                                                      Participant

                                                        What have been your side effects? and are you still doing well on it?

                                                        • July 11, 2015 at 1:49 am
                                                        Rita and Charles
                                                        Participant

                                                          What have been your side effects? and are you still doing well on it?

                                                          • July 11, 2015 at 1:49 am
                                                          Rita and Charles
                                                          Participant

                                                            What have been your side effects? and are you still doing well on it?

                                                          • April 21, 2015 at 4:21 pm
                                                          sweetaugust
                                                          Participant

                                                            Excellent question…and one that all of us here are looking for the answer to.  It is something I ask myself everyday.  I only know that I've been on it for the last 2.5 years and I am still doing great.  The plan as of now is to just keep me on this for good…as long as I stay healthy. 

                                                            I have not tried any other drugs other than Keytruda and it has been working.  And we have talked about me coming off the trial and just seeing how I do…and then if the melanoma appears again…just getting me back on the Keytruda.  But, due to the new FDA approval and it's guidelines, I would be to fail the ipi to get to the Keytruda again.  So instead of doing that, we just decided it is best to keep me on Keytruda.  So I am still on the highest dose of 10mg every 3 weeks for 30 minutes.    Laurie

                                                            • April 21, 2015 at 4:21 pm
                                                            sweetaugust
                                                            Participant

                                                              Excellent question…and one that all of us here are looking for the answer to.  It is something I ask myself everyday.  I only know that I've been on it for the last 2.5 years and I am still doing great.  The plan as of now is to just keep me on this for good…as long as I stay healthy. 

                                                              I have not tried any other drugs other than Keytruda and it has been working.  And we have talked about me coming off the trial and just seeing how I do…and then if the melanoma appears again…just getting me back on the Keytruda.  But, due to the new FDA approval and it's guidelines, I would be to fail the ipi to get to the Keytruda again.  So instead of doing that, we just decided it is best to keep me on Keytruda.  So I am still on the highest dose of 10mg every 3 weeks for 30 minutes.    Laurie

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