keytruda how long for onset of side effects?
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keytruda how long for onset of side effects?

› Forums › General Melanoma Community › keytruda how long for onset of side effects?

  • Post
    • September 23, 2015 at 3:59 am
    Squash
    Participant

    I had my first shot of Keytruda last week and havent really noticed much except a little bit constipated a bit of rumbllings in the stomach.

    Overall but I feel good.

    I am wondering thou how this drug works?

    Is it sort of cumulative?

    So after two or three weeks i might get more side effects?

    And then after next dosage maybe something more?

    And how fast does it work?

    I mean can it work straight away within days or does it take months?

    thanks fro any respones.

     

     

     

     

Viewing 14 reply threads
  • Replies
      • September 23, 2015 at 12:25 pm
      BrianP
      Participant

      It all depends on the patient.  I know that answer sucks but you'll hear that answer a lot with immunotherapy treatment.  There are many on here like myself that have gone nearly two years on Keytruda or Opdivo and could hardly tell we were taking anything.  Others it can cause some tough side effects after the first dose.  I will say that seems to be the minority though.  There's also some in the middle that experience rashes and mild fatigue.  There seems to be two camps on whether there are cummulative side effects over time.  I tend to think that can happen.  Celeste who is really smart on these things thinks that as well.  Unlike Ipi, with opdivo or Keytruda for those that respond most if not nearly all show a decrease in tumors by their first scan at 8 or 12 weeks.  Some who can actually feel or see their tumors have reported watching or feeling their tumors disappear within the first couple weeks. 

      So to answer your first question, for many of us the drug works great and has been nothing short of a miracle drug.  Unfortunately it doesn't work for everyone.  Hopefully soon they will figure out why that's the case.  Best of luck with your treatment. 

      Brian

       

        • September 23, 2015 at 1:33 pm
        Squash
        Participant

        Thanks for the detail.

        So you can really tell pretty quickly if you are going to respond by the sound of things and for most people it also means no really bad side effects.

        My oncologist mentioned that even if i didnt get shrinkage and remained stable that was good because i had low tumour burden with no pain or any sickness starting the treatment.

        He mentioned doing Opdivo if i failed and Ipi. I dont like the sound of Ipi though. It seems to be not that well tolerated and also far less effective.

         

         

         

        • September 23, 2015 at 3:36 pm
        BrianP
        Participant

        It's true that the response rate for Ipi is much less than for Opdivo and Keytruda.  What has been proven though is that the response rate for combining Ipi and Opdivo is one of the highest out there right now for advanced melanoma.  The flip side is a lot of patients on the combo experience severe side effects.  Hopefully you won't need any follow up treatment but the ipi – nivo combo may not be a bad option. 

        Stable would be a good outcome.  A fellow patient once said stable is a tie and in this game a tie is a win.  In my case I had some initial shrinkage and have been stable now for about 18 months.  After a lot of research and consultations I decided to stop treatment last month.  I just had good scans last week.  Hope to have many more years of those.

        • September 23, 2015 at 3:36 pm
        BrianP
        Participant

        It's true that the response rate for Ipi is much less than for Opdivo and Keytruda.  What has been proven though is that the response rate for combining Ipi and Opdivo is one of the highest out there right now for advanced melanoma.  The flip side is a lot of patients on the combo experience severe side effects.  Hopefully you won't need any follow up treatment but the ipi – nivo combo may not be a bad option. 

        Stable would be a good outcome.  A fellow patient once said stable is a tie and in this game a tie is a win.  In my case I had some initial shrinkage and have been stable now for about 18 months.  After a lot of research and consultations I decided to stop treatment last month.  I just had good scans last week.  Hope to have many more years of those.

        • September 23, 2015 at 3:36 pm
        BrianP
        Participant

        It's true that the response rate for Ipi is much less than for Opdivo and Keytruda.  What has been proven though is that the response rate for combining Ipi and Opdivo is one of the highest out there right now for advanced melanoma.  The flip side is a lot of patients on the combo experience severe side effects.  Hopefully you won't need any follow up treatment but the ipi – nivo combo may not be a bad option. 

        Stable would be a good outcome.  A fellow patient once said stable is a tie and in this game a tie is a win.  In my case I had some initial shrinkage and have been stable now for about 18 months.  After a lot of research and consultations I decided to stop treatment last month.  I just had good scans last week.  Hope to have many more years of those.

        • September 23, 2015 at 1:33 pm
        Squash
        Participant

        Thanks for the detail.

        So you can really tell pretty quickly if you are going to respond by the sound of things and for most people it also means no really bad side effects.

        My oncologist mentioned that even if i didnt get shrinkage and remained stable that was good because i had low tumour burden with no pain or any sickness starting the treatment.

        He mentioned doing Opdivo if i failed and Ipi. I dont like the sound of Ipi though. It seems to be not that well tolerated and also far less effective.

         

         

         

        • September 23, 2015 at 1:33 pm
        Squash
        Participant

        Thanks for the detail.

        So you can really tell pretty quickly if you are going to respond by the sound of things and for most people it also means no really bad side effects.

        My oncologist mentioned that even if i didnt get shrinkage and remained stable that was good because i had low tumour burden with no pain or any sickness starting the treatment.

        He mentioned doing Opdivo if i failed and Ipi. I dont like the sound of Ipi though. It seems to be not that well tolerated and also far less effective.

         

         

         

      • September 23, 2015 at 12:25 pm
      BrianP
      Participant

      It all depends on the patient.  I know that answer sucks but you'll hear that answer a lot with immunotherapy treatment.  There are many on here like myself that have gone nearly two years on Keytruda or Opdivo and could hardly tell we were taking anything.  Others it can cause some tough side effects after the first dose.  I will say that seems to be the minority though.  There's also some in the middle that experience rashes and mild fatigue.  There seems to be two camps on whether there are cummulative side effects over time.  I tend to think that can happen.  Celeste who is really smart on these things thinks that as well.  Unlike Ipi, with opdivo or Keytruda for those that respond most if not nearly all show a decrease in tumors by their first scan at 8 or 12 weeks.  Some who can actually feel or see their tumors have reported watching or feeling their tumors disappear within the first couple weeks. 

      So to answer your first question, for many of us the drug works great and has been nothing short of a miracle drug.  Unfortunately it doesn't work for everyone.  Hopefully soon they will figure out why that's the case.  Best of luck with your treatment. 

      Brian

       

      • September 23, 2015 at 12:25 pm
      BrianP
      Participant

      It all depends on the patient.  I know that answer sucks but you'll hear that answer a lot with immunotherapy treatment.  There are many on here like myself that have gone nearly two years on Keytruda or Opdivo and could hardly tell we were taking anything.  Others it can cause some tough side effects after the first dose.  I will say that seems to be the minority though.  There's also some in the middle that experience rashes and mild fatigue.  There seems to be two camps on whether there are cummulative side effects over time.  I tend to think that can happen.  Celeste who is really smart on these things thinks that as well.  Unlike Ipi, with opdivo or Keytruda for those that respond most if not nearly all show a decrease in tumors by their first scan at 8 or 12 weeks.  Some who can actually feel or see their tumors have reported watching or feeling their tumors disappear within the first couple weeks. 

      So to answer your first question, for many of us the drug works great and has been nothing short of a miracle drug.  Unfortunately it doesn't work for everyone.  Hopefully soon they will figure out why that's the case.  Best of luck with your treatment. 

      Brian

       

      • September 23, 2015 at 1:25 pm
      mrsaxde
      Participant

      Let me second what Brian said. The type and severity of side effects will vary by person. Like him, and many others, whatever side effects I'm getting are hardly noticeable. I have some days when I feel very tired. I have some itchy bumps on my legs that come and go. That's it.

      After getting ipi, and breaking out into an itchy rash that kept me on prednisone for months, I wondered if Keytruda was doing anything for me, because I was barely aware I had gotten it. But there's no absolute correlation between side effects from these drugs and how well they work, and wow is it working for me! Several visible skin spots are shrinking. A CT scan last week revealed areas in my chest wall and on one lung are shrinking. It's even eating away at a spot of sebborheic keratosis that I have had on my hip for years.

      You ask how fast it works? I've gotten these results in just 3 cycles. I noticed a change for the better in the spots on my back after just one infusion.

      -Bill

        • September 26, 2015 at 1:31 am
        Squash
        Participant

        That is a good response you must be really pleased.

        Is it likely that you get some increase in pain if Keytruda is working and eating away at tumours?

         

         

        • September 26, 2015 at 1:31 am
        Squash
        Participant

        That is a good response you must be really pleased.

        Is it likely that you get some increase in pain if Keytruda is working and eating away at tumours?

         

         

        • September 26, 2015 at 1:31 am
        Squash
        Participant

        That is a good response you must be really pleased.

        Is it likely that you get some increase in pain if Keytruda is working and eating away at tumours?

         

         

      • September 23, 2015 at 1:25 pm
      mrsaxde
      Participant

      Let me second what Brian said. The type and severity of side effects will vary by person. Like him, and many others, whatever side effects I'm getting are hardly noticeable. I have some days when I feel very tired. I have some itchy bumps on my legs that come and go. That's it.

      After getting ipi, and breaking out into an itchy rash that kept me on prednisone for months, I wondered if Keytruda was doing anything for me, because I was barely aware I had gotten it. But there's no absolute correlation between side effects from these drugs and how well they work, and wow is it working for me! Several visible skin spots are shrinking. A CT scan last week revealed areas in my chest wall and on one lung are shrinking. It's even eating away at a spot of sebborheic keratosis that I have had on my hip for years.

      You ask how fast it works? I've gotten these results in just 3 cycles. I noticed a change for the better in the spots on my back after just one infusion.

      -Bill

      • September 23, 2015 at 1:25 pm
      mrsaxde
      Participant

      Let me second what Brian said. The type and severity of side effects will vary by person. Like him, and many others, whatever side effects I'm getting are hardly noticeable. I have some days when I feel very tired. I have some itchy bumps on my legs that come and go. That's it.

      After getting ipi, and breaking out into an itchy rash that kept me on prednisone for months, I wondered if Keytruda was doing anything for me, because I was barely aware I had gotten it. But there's no absolute correlation between side effects from these drugs and how well they work, and wow is it working for me! Several visible skin spots are shrinking. A CT scan last week revealed areas in my chest wall and on one lung are shrinking. It's even eating away at a spot of sebborheic keratosis that I have had on my hip for years.

      You ask how fast it works? I've gotten these results in just 3 cycles. I noticed a change for the better in the spots on my back after just one infusion.

      -Bill

      • September 23, 2015 at 8:30 pm
      ed williams
      Participant

      Try and get your Oncologist to push the Insurance company to allow you to get either Pd-1 drug first. Easy to make the case since the %  response to treatment is higher than ipi and a second benefit for many is how very easy it is to take(side effects) when compared with Ipi. Wishing you the best!!! Ed

      • September 23, 2015 at 8:30 pm
      ed williams
      Participant

      Try and get your Oncologist to push the Insurance company to allow you to get either Pd-1 drug first. Easy to make the case since the %  response to treatment is higher than ipi and a second benefit for many is how very easy it is to take(side effects) when compared with Ipi. Wishing you the best!!! Ed

      • September 23, 2015 at 8:30 pm
      ed williams
      Participant

      Try and get your Oncologist to push the Insurance company to allow you to get either Pd-1 drug first. Easy to make the case since the %  response to treatment is higher than ipi and a second benefit for many is how very easy it is to take(side effects) when compared with Ipi. Wishing you the best!!! Ed

      • September 24, 2015 at 2:59 pm
      _Paul_
      Participant

      After several rounds of Keytruda I am experiencing increased fatigue and symptoms of colitis.

      The fatigue was bad enough so that I could not work (I am a software engineer and I would just kind of stare at the screen then go and lie down!). Taking a holiday would cause it to fade around 5 weeks since the last infusion but it would return after a subsequent infusion. I am currently on Modafinil (Provigil) to combat the fatigue which is working well.

      The colitis symptoms (diarrhea and frequent bowel movements) are right at the edge of what my oncologist is comfortable with. But they are stable and there has been no blood so I am remaining on the Keytruda.

      The current plan is to receive an infusion every 6 weeks instead of every 3 to try and keep the side effect manageable.

      As far as the cancer goes, everything is stable. I have numerous tumors which are all still visible and the same size except for one which shrank a little and one which was apparently not seen on the latest scan (the radiologist did not mention it at all).

      – Paul.

      • September 24, 2015 at 2:59 pm
      _Paul_
      Participant

      After several rounds of Keytruda I am experiencing increased fatigue and symptoms of colitis.

      The fatigue was bad enough so that I could not work (I am a software engineer and I would just kind of stare at the screen then go and lie down!). Taking a holiday would cause it to fade around 5 weeks since the last infusion but it would return after a subsequent infusion. I am currently on Modafinil (Provigil) to combat the fatigue which is working well.

      The colitis symptoms (diarrhea and frequent bowel movements) are right at the edge of what my oncologist is comfortable with. But they are stable and there has been no blood so I am remaining on the Keytruda.

      The current plan is to receive an infusion every 6 weeks instead of every 3 to try and keep the side effect manageable.

      As far as the cancer goes, everything is stable. I have numerous tumors which are all still visible and the same size except for one which shrank a little and one which was apparently not seen on the latest scan (the radiologist did not mention it at all).

      – Paul.

      • September 24, 2015 at 2:59 pm
      _Paul_
      Participant

      After several rounds of Keytruda I am experiencing increased fatigue and symptoms of colitis.

      The fatigue was bad enough so that I could not work (I am a software engineer and I would just kind of stare at the screen then go and lie down!). Taking a holiday would cause it to fade around 5 weeks since the last infusion but it would return after a subsequent infusion. I am currently on Modafinil (Provigil) to combat the fatigue which is working well.

      The colitis symptoms (diarrhea and frequent bowel movements) are right at the edge of what my oncologist is comfortable with. But they are stable and there has been no blood so I am remaining on the Keytruda.

      The current plan is to receive an infusion every 6 weeks instead of every 3 to try and keep the side effect manageable.

      As far as the cancer goes, everything is stable. I have numerous tumors which are all still visible and the same size except for one which shrank a little and one which was apparently not seen on the latest scan (the radiologist did not mention it at all).

      – Paul.

      • September 24, 2015 at 2:59 pm
      Bubbles
      Participant

      To all…  Here is a post I just put together as well as a link to a video inservice presented by Dr. Weber and Dr. Agrawala regarding side effects and their treatment for both immuno and targeted therapies.  And YES, Virginia (and Brian!!!!) – conventional wisdom FINALLY recognizes that side effects may have an early or late onset, can be CUMULATIVE (especially in regard to arthralgias and fatigue) and while side effects have a weak association to response….responses have been attained by those with little to no side effects and have been lacking in some with a great number of side effects.  Additionally, SIDE EFFECTS SHOULD BE TREATED!!  Early is better than late.  And, prednisone does NOT diminish a positive response!  Here it is:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      Hope it helps.  Thanks to Steven for sharing the link with me!!  Best to you all – c

      • September 24, 2015 at 2:59 pm
      Bubbles
      Participant

      To all…  Here is a post I just put together as well as a link to a video inservice presented by Dr. Weber and Dr. Agrawala regarding side effects and their treatment for both immuno and targeted therapies.  And YES, Virginia (and Brian!!!!) – conventional wisdom FINALLY recognizes that side effects may have an early or late onset, can be CUMULATIVE (especially in regard to arthralgias and fatigue) and while side effects have a weak association to response….responses have been attained by those with little to no side effects and have been lacking in some with a great number of side effects.  Additionally, SIDE EFFECTS SHOULD BE TREATED!!  Early is better than late.  And, prednisone does NOT diminish a positive response!  Here it is:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      Hope it helps.  Thanks to Steven for sharing the link with me!!  Best to you all – c

        • September 24, 2015 at 11:58 pm
        Squash
        Participant

        Thank you for the information.

        The only real thing i have noticed at the moment is constipation which is really annoying. I had a bit of gastric distress the first couple of nights but that sort of went away.

        I am going to buy some pysillium powder for the constipation or if really desperate do an enema.

        Do you know if there is a list of other medications that might interfere with Keytruda?

        My onc didnt really indicate if any other drugs caused problems with Keytruda.

         

         

         

        • September 24, 2015 at 11:58 pm
        Squash
        Participant

        Thank you for the information.

        The only real thing i have noticed at the moment is constipation which is really annoying. I had a bit of gastric distress the first couple of nights but that sort of went away.

        I am going to buy some pysillium powder for the constipation or if really desperate do an enema.

        Do you know if there is a list of other medications that might interfere with Keytruda?

        My onc didnt really indicate if any other drugs caused problems with Keytruda.

         

         

         

        • September 25, 2015 at 1:05 pm
        mrsaxde
        Participant

        The only thing I have run across regarding other medications and Keytruda (or any of the immunotherapy drugs) is an advisory to consult your oncologist before receiving any vaccinations.

        My PCP wanted me to get a flu and pneumonia shot, and given how Keytruda works, I told him I thought I should ask my oncologist first. When I got home, I looked for that info and found that that is exactly what they recommend you do.

        • September 25, 2015 at 1:05 pm
        mrsaxde
        Participant

        The only thing I have run across regarding other medications and Keytruda (or any of the immunotherapy drugs) is an advisory to consult your oncologist before receiving any vaccinations.

        My PCP wanted me to get a flu and pneumonia shot, and given how Keytruda works, I told him I thought I should ask my oncologist first. When I got home, I looked for that info and found that that is exactly what they recommend you do.

        • September 26, 2015 at 1:27 am
        Squash
        Participant

        I havent seen anything about other medications that might interfere with Keytruda other than vaccinations either.

        Maybe they dont really know given how new the drug is ?

         

         

        • September 26, 2015 at 1:27 am
        Squash
        Participant

        I havent seen anything about other medications that might interfere with Keytruda other than vaccinations either.

        Maybe they dont really know given how new the drug is ?

         

         

        • September 26, 2015 at 1:27 am
        Squash
        Participant

        I havent seen anything about other medications that might interfere with Keytruda other than vaccinations either.

        Maybe they dont really know given how new the drug is ?

         

         

        • September 25, 2015 at 1:05 pm
        mrsaxde
        Participant

        The only thing I have run across regarding other medications and Keytruda (or any of the immunotherapy drugs) is an advisory to consult your oncologist before receiving any vaccinations.

        My PCP wanted me to get a flu and pneumonia shot, and given how Keytruda works, I told him I thought I should ask my oncologist first. When I got home, I looked for that info and found that that is exactly what they recommend you do.

        • September 24, 2015 at 11:58 pm
        Squash
        Participant

        Thank you for the information.

        The only real thing i have noticed at the moment is constipation which is really annoying. I had a bit of gastric distress the first couple of nights but that sort of went away.

        I am going to buy some pysillium powder for the constipation or if really desperate do an enema.

        Do you know if there is a list of other medications that might interfere with Keytruda?

        My onc didnt really indicate if any other drugs caused problems with Keytruda.

         

         

         

        • September 25, 2015 at 1:09 am
        ed williams
        Participant

        Thanks Celeste for the excellent webinar, it is one of the best on how to manage side effects of Immunotherapy drugs and targeted therapies that I have watched. Every new stage 4 patient should really take the time and watch this webinar. Thanks again!!!! Ed

        • September 25, 2015 at 1:09 am
        ed williams
        Participant

        Thanks Celeste for the excellent webinar, it is one of the best on how to manage side effects of Immunotherapy drugs and targeted therapies that I have watched. Every new stage 4 patient should really take the time and watch this webinar. Thanks again!!!! Ed

        • September 25, 2015 at 1:09 am
        ed williams
        Participant

        Thanks Celeste for the excellent webinar, it is one of the best on how to manage side effects of Immunotherapy drugs and targeted therapies that I have watched. Every new stage 4 patient should really take the time and watch this webinar. Thanks again!!!! Ed

      • September 24, 2015 at 2:59 pm
      Bubbles
      Participant

      To all…  Here is a post I just put together as well as a link to a video inservice presented by Dr. Weber and Dr. Agrawala regarding side effects and their treatment for both immuno and targeted therapies.  And YES, Virginia (and Brian!!!!) – conventional wisdom FINALLY recognizes that side effects may have an early or late onset, can be CUMULATIVE (especially in regard to arthralgias and fatigue) and while side effects have a weak association to response….responses have been attained by those with little to no side effects and have been lacking in some with a great number of side effects.  Additionally, SIDE EFFECTS SHOULD BE TREATED!!  Early is better than late.  And, prednisone does NOT diminish a positive response!  Here it is:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      Hope it helps.  Thanks to Steven for sharing the link with me!!  Best to you all – c

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