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It appears Keytruda is not working well
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It appears Keytruda is not working well

› Forums › General Melanoma Community › It appears Keytruda is not working well

  • Post
    • January 26, 2015 at 6:01 pm
    JustMeInCA
    Participant

      My father had his follow-up PET/CT at UCSF after four doses of Keytruda. While some of his smallest tumors shrunk or disappeared, the larger ones showed growth, in particular a new one on his liver which grew considerably from October to January. 

      His doctor, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

      1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

      2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

      3. Try two more infusions of Keytruda but at 2-week intervals.

      Dad has been hospitalized since Thursday, as he started having violent tremors and increasing delirium  after the PET/CT. Luckily, we were at UCSF, so they got him admitted immediately. After many tests and procedures, they believe this was caused by a lung infection, and he has improved considerably after a few days of antibiotics.

      I know that no one can really advise me here, but I'm just looking for some thoughts, experiences,feedback on what to consider in choosing the next treatment. I have much faith in Dr. Daud, as he's a nationally known expert on melanoma with much more experience with PD-1 than many, but I was clinging to the hope of that "delayed response". On the other hand, I can see his point of not wanting to waste too much time waiting for a response that more likely than not won't  happen. 

      Any thoughts, my friends?

       

       

    Viewing 5 reply threads
    • Replies
        • January 27, 2015 at 1:25 am
        arthurjedi007
        Participant

          Oh how awful. Very sad. Sounds like he has a good doc though. I would go with the other pd1 and hopefully they can monitor it more closely and maybe even radiation If doc thinks needed. Either that or give the keytruda the 2 doses to see if kicks in. Temodar I've heard it combined with yervoy but not by itself so dunno. Not sure if that is good advice but with those choices that's what I think I would do.

          For my first keytruda scan my mayo doc I had 7 tumors still growing so he wanted 3 radiated and I think it was 2 more keytruda doses then scan. But with radiation I. Was in no shape to go back up there and became fad approved so started get it local and second scan showed some tumors had mild growth but report was vague and didn't say how many. Still on it for now. Fell today so first ambulance ride to er but dad overheard they couldn't even do an X-ray until tomorrow and I felt not ok but ok for me so got out of there and got down the halls for another dose radiation. Tomorrow I think is dose 13 of keytruda and got 9 more radiations to go. Still swallowing and choking issues but I can eat solids standing up fairly ok.

          Anyway stay strong. Hang in there. Hopefully your dad can have that fighting spirit and kick this stuff in the rear. It is great the antibiotics got him feeling better at least.

          Artie

          • January 27, 2015 at 1:25 am
          arthurjedi007
          Participant

            Oh how awful. Very sad. Sounds like he has a good doc though. I would go with the other pd1 and hopefully they can monitor it more closely and maybe even radiation If doc thinks needed. Either that or give the keytruda the 2 doses to see if kicks in. Temodar I've heard it combined with yervoy but not by itself so dunno. Not sure if that is good advice but with those choices that's what I think I would do.

            For my first keytruda scan my mayo doc I had 7 tumors still growing so he wanted 3 radiated and I think it was 2 more keytruda doses then scan. But with radiation I. Was in no shape to go back up there and became fad approved so started get it local and second scan showed some tumors had mild growth but report was vague and didn't say how many. Still on it for now. Fell today so first ambulance ride to er but dad overheard they couldn't even do an X-ray until tomorrow and I felt not ok but ok for me so got out of there and got down the halls for another dose radiation. Tomorrow I think is dose 13 of keytruda and got 9 more radiations to go. Still swallowing and choking issues but I can eat solids standing up fairly ok.

            Anyway stay strong. Hang in there. Hopefully your dad can have that fighting spirit and kick this stuff in the rear. It is great the antibiotics got him feeling better at least.

            Artie

              • January 27, 2015 at 7:35 pm
              JustMeInCA
              Participant

                Artie, I know you have had a lot of experience with radiation. Dr. Daud thought my dad might try that on the tumors on his leg which are causing him a great deal of pain in the hopes of reducing the tumors and thereby reducing the pain. What kinds of side effects could we expect from local radiation? Dad's tumors are ulcerated, so they are open wounds right now. Would this make it worse? If my memory serves, none of yours are open, so I know it might be a bit different for Dad. I just hate to put him through more trauma.

                • January 27, 2015 at 11:59 pm
                arthurjedi007
                Participant

                  Ouch. I have no idea about ulcerated. Radiation does sap your strength and make you tired. Depending on where in the leg he might have problems with the syatic nerve or other types of damage but most likely not. I wish Joe was recovered he is the real radiation expert. If it was me You might see if a couple radiation treatments help basically they call it palliative. If it is worse then quit but same or better then continue.

                  Artie

                  • January 27, 2015 at 11:59 pm
                  arthurjedi007
                  Participant

                    Ouch. I have no idea about ulcerated. Radiation does sap your strength and make you tired. Depending on where in the leg he might have problems with the syatic nerve or other types of damage but most likely not. I wish Joe was recovered he is the real radiation expert. If it was me You might see if a couple radiation treatments help basically they call it palliative. If it is worse then quit but same or better then continue.

                    Artie

                    • January 28, 2015 at 5:06 pm
                    JustMeInCA
                    Participant

                      Thanks, Artie. I guess nothing will be done until he's had a little time to recover from the pneumonia. I brought him home last night, so I'll give us both a couple days to recover before trying to tackle the next step.

                      • January 28, 2015 at 5:06 pm
                      JustMeInCA
                      Participant

                        Thanks, Artie. I guess nothing will be done until he's had a little time to recover from the pneumonia. I brought him home last night, so I'll give us both a couple days to recover before trying to tackle the next step.

                        • January 28, 2015 at 5:06 pm
                        JustMeInCA
                        Participant

                          Thanks, Artie. I guess nothing will be done until he's had a little time to recover from the pneumonia. I brought him home last night, so I'll give us both a couple days to recover before trying to tackle the next step.

                          • January 27, 2015 at 11:59 pm
                          arthurjedi007
                          Participant

                            Ouch. I have no idea about ulcerated. Radiation does sap your strength and make you tired. Depending on where in the leg he might have problems with the syatic nerve or other types of damage but most likely not. I wish Joe was recovered he is the real radiation expert. If it was me You might see if a couple radiation treatments help basically they call it palliative. If it is worse then quit but same or better then continue.

                            Artie

                            • January 27, 2015 at 7:35 pm
                            JustMeInCA
                            Participant

                              Artie, I know you have had a lot of experience with radiation. Dr. Daud thought my dad might try that on the tumors on his leg which are causing him a great deal of pain in the hopes of reducing the tumors and thereby reducing the pain. What kinds of side effects could we expect from local radiation? Dad's tumors are ulcerated, so they are open wounds right now. Would this make it worse? If my memory serves, none of yours are open, so I know it might be a bit different for Dad. I just hate to put him through more trauma.

                              • January 27, 2015 at 7:35 pm
                              JustMeInCA
                              Participant

                                Artie, I know you have had a lot of experience with radiation. Dr. Daud thought my dad might try that on the tumors on his leg which are causing him a great deal of pain in the hopes of reducing the tumors and thereby reducing the pain. What kinds of side effects could we expect from local radiation? Dad's tumors are ulcerated, so they are open wounds right now. Would this make it worse? If my memory serves, none of yours are open, so I know it might be a bit different for Dad. I just hate to put him through more trauma.

                              • January 27, 2015 at 1:25 am
                              arthurjedi007
                              Participant

                                Oh how awful. Very sad. Sounds like he has a good doc though. I would go with the other pd1 and hopefully they can monitor it more closely and maybe even radiation If doc thinks needed. Either that or give the keytruda the 2 doses to see if kicks in. Temodar I've heard it combined with yervoy but not by itself so dunno. Not sure if that is good advice but with those choices that's what I think I would do.

                                For my first keytruda scan my mayo doc I had 7 tumors still growing so he wanted 3 radiated and I think it was 2 more keytruda doses then scan. But with radiation I. Was in no shape to go back up there and became fad approved so started get it local and second scan showed some tumors had mild growth but report was vague and didn't say how many. Still on it for now. Fell today so first ambulance ride to er but dad overheard they couldn't even do an X-ray until tomorrow and I felt not ok but ok for me so got out of there and got down the halls for another dose radiation. Tomorrow I think is dose 13 of keytruda and got 9 more radiations to go. Still swallowing and choking issues but I can eat solids standing up fairly ok.

                                Anyway stay strong. Hang in there. Hopefully your dad can have that fighting spirit and kick this stuff in the rear. It is great the antibiotics got him feeling better at least.

                                Artie

                                • January 27, 2015 at 2:51 pm
                                ed williams
                                Participant

                                  If you are looking for idea of new treatments that are at the clinical trial phase, I would suggest to take a look at a video by Dr. Hamid ( The Angeles Clinic) They had a symposium in 2014 where Dr. Hamid present what new drug are being looked at and what new treatments that will become available in trials. I have not been able to copy and paste the link (sorry). If you search on youtube for Dr.Hamid  The Angeles Clinic, with the title of the presentation" Future Therapies for Melanoma." I wish you the best in looking for the next step. Switching to another Pd-1 seem to me as the same path, there are several Inhibitory and Activating pathways now being studied such as Tim-3, Lag-3 , GITR, Ox40, Cd137. A new pathway might be the way to go. I hope this was of some assistance. Ed

                                    • January 27, 2015 at 7:36 pm
                                    JustMeInCA
                                    Participant

                                      Thanks, Ed. I'll ask Dr. Daud about that, but his biggest concern has been Dad's age (83) and not wanting to put him through anything too taxing. 

                                      • January 27, 2015 at 7:36 pm
                                      JustMeInCA
                                      Participant

                                        Thanks, Ed. I'll ask Dr. Daud about that, but his biggest concern has been Dad's age (83) and not wanting to put him through anything too taxing. 

                                        • January 27, 2015 at 7:36 pm
                                        JustMeInCA
                                        Participant

                                          Thanks, Ed. I'll ask Dr. Daud about that, but his biggest concern has been Dad's age (83) and not wanting to put him through anything too taxing. 

                                        • January 27, 2015 at 2:51 pm
                                        ed williams
                                        Participant

                                          If you are looking for idea of new treatments that are at the clinical trial phase, I would suggest to take a look at a video by Dr. Hamid ( The Angeles Clinic) They had a symposium in 2014 where Dr. Hamid present what new drug are being looked at and what new treatments that will become available in trials. I have not been able to copy and paste the link (sorry). If you search on youtube for Dr.Hamid  The Angeles Clinic, with the title of the presentation" Future Therapies for Melanoma." I wish you the best in looking for the next step. Switching to another Pd-1 seem to me as the same path, there are several Inhibitory and Activating pathways now being studied such as Tim-3, Lag-3 , GITR, Ox40, Cd137. A new pathway might be the way to go. I hope this was of some assistance. Ed

                                          • January 27, 2015 at 2:51 pm
                                          ed williams
                                          Participant

                                            If you are looking for idea of new treatments that are at the clinical trial phase, I would suggest to take a look at a video by Dr. Hamid ( The Angeles Clinic) They had a symposium in 2014 where Dr. Hamid present what new drug are being looked at and what new treatments that will become available in trials. I have not been able to copy and paste the link (sorry). If you search on youtube for Dr.Hamid  The Angeles Clinic, with the title of the presentation" Future Therapies for Melanoma." I wish you the best in looking for the next step. Switching to another Pd-1 seem to me as the same path, there are several Inhibitory and Activating pathways now being studied such as Tim-3, Lag-3 , GITR, Ox40, Cd137. A new pathway might be the way to go. I hope this was of some assistance. Ed

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