Tell me your Keytruda experiences

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  • Post
    • July 23, 2015 at 5:17 pm
    mrsaxde
    Participant

      After getting what my doctor called a "mixed" response to Yervoy, he decided to start me on Keytruda. My most recent scans, the last being a CT scan in May, revealed that internally, my disease appears to be stable. There is one lesion in my right lung that has not changed since last November, and the CT scan picked out two very small lesions in the same lung that were not present on a PET scan that was done in February. But the doctor said they were so small that they may have been there, but they were too small to be caught by the PET scan.

      So internally there doesn't appear to be much going on. But I keep getting new skin lesions, which is why the doctor decided to go ahead with Keytruda. A couple of lesions that have been there for a while don't seem to have gotten any larger. In fact, they may have shrunk ever so slightly. But I've had another 4-5 small lesions appear near the site of the orginal excision.

      Anyway, I'm looking to hear from people who have received Keytruda following a partial response to Yervoy. What response did you get to Keytruda? From what I've read, the response rate for Keytruda is lower than that for Yervoy. But if you have at least some response to Yervoy, does that mean that you'll have at least a partial response to Keytruda?

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    • Replies
        • July 23, 2015 at 7:29 pm
        arthurjedi007
        Participant

          Actually from what I've read the response rate for keytruda is higher than yervoy but like one of my docs said he could give it to 1000 different patients and the response could be different. If I remember right the most recent for yervoy was including lots of patients not in the trials and the response rate is 15%. For keytruda they are claiming 40% but if you look at the small trial that had the FDA approved dosage the response rate is 25%. 

          For me yervoy was no good response. Everything kept growing and some grew a whole lot. For keytruda each scan showed a mixed response. I was on it about a year then 2 months on the Nivo pd1 and now had to come off it to try and get in a trial. Basically my doc said the keytruda slowed things down but by itself it is not enough for me. Things keep growing and in 11 months 1 new one showed up. Not sure about the last 3 months. Way better than the braf pills and yervoy for me.

          Artie

          • July 23, 2015 at 7:29 pm
          arthurjedi007
          Participant

            Actually from what I've read the response rate for keytruda is higher than yervoy but like one of my docs said he could give it to 1000 different patients and the response could be different. If I remember right the most recent for yervoy was including lots of patients not in the trials and the response rate is 15%. For keytruda they are claiming 40% but if you look at the small trial that had the FDA approved dosage the response rate is 25%. 

            For me yervoy was no good response. Everything kept growing and some grew a whole lot. For keytruda each scan showed a mixed response. I was on it about a year then 2 months on the Nivo pd1 and now had to come off it to try and get in a trial. Basically my doc said the keytruda slowed things down but by itself it is not enough for me. Things keep growing and in 11 months 1 new one showed up. Not sure about the last 3 months. Way better than the braf pills and yervoy for me.

            Artie

            • July 23, 2015 at 7:29 pm
            arthurjedi007
            Participant

              Actually from what I've read the response rate for keytruda is higher than yervoy but like one of my docs said he could give it to 1000 different patients and the response could be different. If I remember right the most recent for yervoy was including lots of patients not in the trials and the response rate is 15%. For keytruda they are claiming 40% but if you look at the small trial that had the FDA approved dosage the response rate is 25%. 

              For me yervoy was no good response. Everything kept growing and some grew a whole lot. For keytruda each scan showed a mixed response. I was on it about a year then 2 months on the Nivo pd1 and now had to come off it to try and get in a trial. Basically my doc said the keytruda slowed things down but by itself it is not enough for me. Things keep growing and in 11 months 1 new one showed up. Not sure about the last 3 months. Way better than the braf pills and yervoy for me.

              Artie

                • July 23, 2015 at 7:58 pm
                mrsaxde
                Participant

                  Thanks for the info, Artie. Yeah, I saw the 25% number about Keytruda, but I was going off of the trials for Yervoy I guess. I thought the response rate for it was around 33%. If they're getting a 40% response rate on Keytruda now, that's great!

                  I'm sorry to hear that neither Yervoy nor Keytruda really helped you a lot. Hopefully you can get into, and get some good results from a trial.

                  • July 24, 2015 at 1:26 am
                  tschmith
                  Participant

                    I have been taken off Keytruda after a year on it because I am currently NED.  However, we'll see if that continues when I have my scans in September.  It's been great for me…very little side effects and effective. I actually kind of miss it! I started it after a failed trial at NIH where I received T-cells, so my doctor feels that the positive results were due to the combination.

                    Best wishes…Terrie

                    • July 24, 2015 at 6:15 pm
                    mrsaxde
                    Participant

                      Thanks Terrie!

                      I had side effects that started, I think, around 2 weeks after my first dose of Yervoy. The itchy rash, mainly. So you're saying that you responded to Keytruda without much in the way of side effects? The rash, and about a month's worth of diarrhea and gastric upset after my last Yervoy treatment told me that it was working, at least to an extent. So if I understand you right, Keytruda might be working for me, with very few side effects?

                      I'm  glad you're doing well! Hoping for good results for myself, too.

                      Bill

                      • July 24, 2015 at 6:15 pm
                      mrsaxde
                      Participant

                        Thanks Terrie!

                        I had side effects that started, I think, around 2 weeks after my first dose of Yervoy. The itchy rash, mainly. So you're saying that you responded to Keytruda without much in the way of side effects? The rash, and about a month's worth of diarrhea and gastric upset after my last Yervoy treatment told me that it was working, at least to an extent. So if I understand you right, Keytruda might be working for me, with very few side effects?

                        I'm  glad you're doing well! Hoping for good results for myself, too.

                        Bill

                        • July 24, 2015 at 6:15 pm
                        mrsaxde
                        Participant

                          Thanks Terrie!

                          I had side effects that started, I think, around 2 weeks after my first dose of Yervoy. The itchy rash, mainly. So you're saying that you responded to Keytruda without much in the way of side effects? The rash, and about a month's worth of diarrhea and gastric upset after my last Yervoy treatment told me that it was working, at least to an extent. So if I understand you right, Keytruda might be working for me, with very few side effects?

                          I'm  glad you're doing well! Hoping for good results for myself, too.

                          Bill

                          • July 24, 2015 at 1:26 am
                          tschmith
                          Participant

                            I have been taken off Keytruda after a year on it because I am currently NED.  However, we'll see if that continues when I have my scans in September.  It's been great for me…very little side effects and effective. I actually kind of miss it! I started it after a failed trial at NIH where I received T-cells, so my doctor feels that the positive results were due to the combination.

                            Best wishes…Terrie

                            • July 24, 2015 at 1:26 am
                            tschmith
                            Participant

                              I have been taken off Keytruda after a year on it because I am currently NED.  However, we'll see if that continues when I have my scans in September.  It's been great for me…very little side effects and effective. I actually kind of miss it! I started it after a failed trial at NIH where I received T-cells, so my doctor feels that the positive results were due to the combination.

                              Best wishes…Terrie

                              • July 23, 2015 at 7:58 pm
                              mrsaxde
                              Participant

                                Thanks for the info, Artie. Yeah, I saw the 25% number about Keytruda, but I was going off of the trials for Yervoy I guess. I thought the response rate for it was around 33%. If they're getting a 40% response rate on Keytruda now, that's great!

                                I'm sorry to hear that neither Yervoy nor Keytruda really helped you a lot. Hopefully you can get into, and get some good results from a trial.

                                • July 23, 2015 at 7:58 pm
                                mrsaxde
                                Participant

                                  Thanks for the info, Artie. Yeah, I saw the 25% number about Keytruda, but I was going off of the trials for Yervoy I guess. I thought the response rate for it was around 33%. If they're getting a 40% response rate on Keytruda now, that's great!

                                  I'm sorry to hear that neither Yervoy nor Keytruda really helped you a lot. Hopefully you can get into, and get some good results from a trial.

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