Keytruda
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Keytruda

› Forums › General Melanoma Community › Keytruda

  • Post
    • August 20, 2016 at 2:59 am
    Capt jack
    Participant

    Hi everyone, New to site.  Looking for others on keytruda who are NED and made a decision to stop treatments and go with scans every three months.  My main side effect was extreme fatigue and vitilgo. Oncologist wants me to continue treatments into progression, but the fatigue renders me close to useless. There isn't much in the way of patients experiences to help with the decision.

Viewing 11 reply threads
  • Replies
      • August 20, 2016 at 4:48 am
      Casitas1
      Participant

      Hey Capt., I have been ned. only three weeks on Keytruda. My Oncologist said another clear set of scans(6 mo.) to start thinking about stopping treatment Yeah, fatigue is pretty brutal along with joint inflamation and Keytruda cough…

      Best, Paul

      • August 20, 2016 at 4:48 am
      Casitas1
      Participant

      Hey Capt., I have been ned. only three weeks on Keytruda. My Oncologist said another clear set of scans(6 mo.) to start thinking about stopping treatment Yeah, fatigue is pretty brutal along with joint inflamation and Keytruda cough…

      Best, Paul

      • August 20, 2016 at 4:48 am
      Casitas1
      Participant

      Hey Capt., I have been ned. only three weeks on Keytruda. My Oncologist said another clear set of scans(6 mo.) to start thinking about stopping treatment Yeah, fatigue is pretty brutal along with joint inflamation and Keytruda cough…

      Best, Paul

      • August 20, 2016 at 6:18 pm
      Cathy M
      Participant

      Can't offer any help with your decision but congrats on NED !!  

      • August 20, 2016 at 6:18 pm
      Cathy M
      Participant

      Can't offer any help with your decision but congrats on NED !!  

      • August 20, 2016 at 6:18 pm
      Cathy M
      Participant

      Can't offer any help with your decision but congrats on NED !!  

      • August 20, 2016 at 6:57 pm
      ed williams
      Participant

      Hi there Capt Jack, great question that a whole bunch of us want to have a clear answer for. I have two video links that I hope are helpfull to you. The first one features Dr.Jason Luke and Dr. Jeffrey Weber on onclive peer exchange. https://www.youtube.com/watch?v=aSXv02OdoO4   The second link features Dr. Jim Allison of M.D.Anderson in Houston, talking about Immunotherapy research in general. If you haven't listened to him speak before, you are in for a treat, he has the ability to explain melanoma Immunotherapy research like no other. Best wishes!!!Ed   https://www.youtube.com/watch?v=CoBkuTOPJqg 

      • August 20, 2016 at 6:57 pm
      ed williams
      Participant

      Hi there Capt Jack, great question that a whole bunch of us want to have a clear answer for. I have two video links that I hope are helpfull to you. The first one features Dr.Jason Luke and Dr. Jeffrey Weber on onclive peer exchange. https://www.youtube.com/watch?v=aSXv02OdoO4   The second link features Dr. Jim Allison of M.D.Anderson in Houston, talking about Immunotherapy research in general. If you haven't listened to him speak before, you are in for a treat, he has the ability to explain melanoma Immunotherapy research like no other. Best wishes!!!Ed   https://www.youtube.com/watch?v=CoBkuTOPJqg 

      • August 20, 2016 at 6:57 pm
      ed williams
      Participant

      Hi there Capt Jack, great question that a whole bunch of us want to have a clear answer for. I have two video links that I hope are helpfull to you. The first one features Dr.Jason Luke and Dr. Jeffrey Weber on onclive peer exchange. https://www.youtube.com/watch?v=aSXv02OdoO4   The second link features Dr. Jim Allison of M.D.Anderson in Houston, talking about Immunotherapy research in general. If you haven't listened to him speak before, you are in for a treat, he has the ability to explain melanoma Immunotherapy research like no other. Best wishes!!!Ed   https://www.youtube.com/watch?v=CoBkuTOPJqg 

        • August 23, 2016 at 2:02 pm
        Capt jack
        Participant

        Thanks so much for the Links Ed.  Pretty sure I am going to withhold treatments and get a ct scan in 3-4 months. It seems as its different for each person. Family and friends can't hardly believe that I had such a complete response. Hoping the fatigue also subsides where I have the energy to do things again. Twenty years ago my daughter in law had a melanoma on her forearm.  Four months later she was gone!  Thank God for the research and treatments that are now available.

        • August 23, 2016 at 2:02 pm
        Capt jack
        Participant

        Thanks so much for the Links Ed.  Pretty sure I am going to withhold treatments and get a ct scan in 3-4 months. It seems as its different for each person. Family and friends can't hardly believe that I had such a complete response. Hoping the fatigue also subsides where I have the energy to do things again. Twenty years ago my daughter in law had a melanoma on her forearm.  Four months later she was gone!  Thank God for the research and treatments that are now available.

        • August 23, 2016 at 2:02 pm
        Capt jack
        Participant

        Thanks so much for the Links Ed.  Pretty sure I am going to withhold treatments and get a ct scan in 3-4 months. It seems as its different for each person. Family and friends can't hardly believe that I had such a complete response. Hoping the fatigue also subsides where I have the energy to do things again. Twenty years ago my daughter in law had a melanoma on her forearm.  Four months later she was gone!  Thank God for the research and treatments that are now available.

      • August 22, 2016 at 7:42 pm
      JuTMSY4
      Participant

      I have been on Keytruda for about 1.5 years and NED* for about 9 months.  My doc and I have talked about how far we'd like to go and what she'd like to see.  She suggested that many doctors she interacts with beleive a 2 year course is reasonable (but apparently anecdotal) if side effects are limited (they are for me).  Whether that might be the case for you is still case-by-case for all doctors.  There is apparently no regiment for those that are NED.  

      I will say that a friend of mine from high school did 2 years and went off and has had minor scares, but no actual recurrences.  YMMV

      *I say NED with an asterisk because it's really no evidence of active disease.  My first couple CTs after my first treatments showed disease, but my first PET after starting showed no evidence of active disease.  We've seen some weird activity on CTs (things getting larger, small, changing shape) but PET has been consistent.  

      Good luck – it's a hard decision, but there is some evidence of benefits for going back on Keytruda if there is a recurrence.  There's also a combo option as well, which has shown promise even after Keytruda failure.  

       

      • August 22, 2016 at 7:42 pm
      JuTMSY4
      Participant

      I have been on Keytruda for about 1.5 years and NED* for about 9 months.  My doc and I have talked about how far we'd like to go and what she'd like to see.  She suggested that many doctors she interacts with beleive a 2 year course is reasonable (but apparently anecdotal) if side effects are limited (they are for me).  Whether that might be the case for you is still case-by-case for all doctors.  There is apparently no regiment for those that are NED.  

      I will say that a friend of mine from high school did 2 years and went off and has had minor scares, but no actual recurrences.  YMMV

      *I say NED with an asterisk because it's really no evidence of active disease.  My first couple CTs after my first treatments showed disease, but my first PET after starting showed no evidence of active disease.  We've seen some weird activity on CTs (things getting larger, small, changing shape) but PET has been consistent.  

      Good luck – it's a hard decision, but there is some evidence of benefits for going back on Keytruda if there is a recurrence.  There's also a combo option as well, which has shown promise even after Keytruda failure.  

       

      • August 22, 2016 at 7:42 pm
      JuTMSY4
      Participant

      I have been on Keytruda for about 1.5 years and NED* for about 9 months.  My doc and I have talked about how far we'd like to go and what she'd like to see.  She suggested that many doctors she interacts with beleive a 2 year course is reasonable (but apparently anecdotal) if side effects are limited (they are for me).  Whether that might be the case for you is still case-by-case for all doctors.  There is apparently no regiment for those that are NED.  

      I will say that a friend of mine from high school did 2 years and went off and has had minor scares, but no actual recurrences.  YMMV

      *I say NED with an asterisk because it's really no evidence of active disease.  My first couple CTs after my first treatments showed disease, but my first PET after starting showed no evidence of active disease.  We've seen some weird activity on CTs (things getting larger, small, changing shape) but PET has been consistent.  

      Good luck – it's a hard decision, but there is some evidence of benefits for going back on Keytruda if there is a recurrence.  There's also a combo option as well, which has shown promise even after Keytruda failure.  

       

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