The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New issue? How to tell PD1 is working?

Forums General Melanoma Community New issue? How to tell PD1 is working?

  • Post
    rick1981
    Participant

      Hi all,

      I posted this week about my wife's (new) brain mets after a double seizure this week. They came on the day of the 3rd Pembro infusion.

      We had a feeling Pembro was working as my wife has been very ill in early December after her previous treatment failed (new mets on scan of December 3rd vs October 27th; LDH moving up from 400 in October to 1300+ in December) and she started feeling significantly better as of her 2nd infusion on Christmas Eve – she went from bed ridden to being full of energy. LDH also dropped back to 600. Seemed like Pembro worked right away, which was what our onc also though.

      However, we just read the full blood analysis that was done on January 14th, the date of her 3rd infusion, so basically showing the impact of 2 Pembro treatments. LDH has shot back up to 1300. So in the accompanying letter it seems that our MD is now unsure if Pembro is actually working (the new brain mets may contribute this his thoughts – although they could have also arisen during the "free fall" period between treatments).

      Any thoughts on this?

      How can LDH drop so quickly, my wife feel so much better within 3-4 weeks of Pembro, continue to feel good at six weeks and then see blood values that indicate it may not be working after all?

      Apart from scans, what are other ways to get an indication of PD1 is working? Any other blood values to track?

      Thanks!

      Rick

       

    Viewing 14 reply threads
    • Replies
        Jacqueh27
        Participant

          Hi Rick, Jacque again. πŸ™‚ man, I just dont understand this either but don't lose hope. When you told me about those LDH levels before I definitely was told by the Oncologost it was a good sign but before my daughters last YERVOY infusion they didn't even check the LDH which lead me believe that this not completely indicative. It's so frustrating to have to wait for scans to know for sure and I hope somebody had better answers for you. Just wanted to share my same concern. How do we know this stuff?? You and your wife are in my prayers. Keep the faith! 

          Iacque 

          Jacqueh27
          Participant

            Hi Rick, Jacque again. πŸ™‚ man, I just dont understand this either but don't lose hope. When you told me about those LDH levels before I definitely was told by the Oncologost it was a good sign but before my daughters last YERVOY infusion they didn't even check the LDH which lead me believe that this not completely indicative. It's so frustrating to have to wait for scans to know for sure and I hope somebody had better answers for you. Just wanted to share my same concern. How do we know this stuff?? You and your wife are in my prayers. Keep the faith! 

            Iacque 

            Jacqueh27
            Participant

              Hi Rick, Jacque again. πŸ™‚ man, I just dont understand this either but don't lose hope. When you told me about those LDH levels before I definitely was told by the Oncologost it was a good sign but before my daughters last YERVOY infusion they didn't even check the LDH which lead me believe that this not completely indicative. It's so frustrating to have to wait for scans to know for sure and I hope somebody had better answers for you. Just wanted to share my same concern. How do we know this stuff?? You and your wife are in my prayers. Keep the faith! 

              Iacque 

              arthurjedi007
              Participant

                The trial coordinator at Sarah cannon at Nashville told me ldh can be all over the place while on pd1. Even ldh going down didn't mean pd1 was working and going up didn't mean it wasn't working. They had four brands of pd1 going on before I got there that she was referring to. She did say a higher ldh is usually considered not good but not always. Granted that is just one persons opinion who has dealt with a lot of pd1 patients. 

                So I dunno. I personally think it going up is bad and mine keeps going up. Although this last dose of pd1 they didn't bother to test for it for a change. So I dunno.

                Artie

                arthurjedi007
                Participant

                  The trial coordinator at Sarah cannon at Nashville told me ldh can be all over the place while on pd1. Even ldh going down didn't mean pd1 was working and going up didn't mean it wasn't working. They had four brands of pd1 going on before I got there that she was referring to. She did say a higher ldh is usually considered not good but not always. Granted that is just one persons opinion who has dealt with a lot of pd1 patients. 

                  So I dunno. I personally think it going up is bad and mine keeps going up. Although this last dose of pd1 they didn't bother to test for it for a change. So I dunno.

                  Artie

                  arthurjedi007
                  Participant

                    The trial coordinator at Sarah cannon at Nashville told me ldh can be all over the place while on pd1. Even ldh going down didn't mean pd1 was working and going up didn't mean it wasn't working. They had four brands of pd1 going on before I got there that she was referring to. She did say a higher ldh is usually considered not good but not always. Granted that is just one persons opinion who has dealt with a lot of pd1 patients. 

                    So I dunno. I personally think it going up is bad and mine keeps going up. Although this last dose of pd1 they didn't bother to test for it for a change. So I dunno.

                    Artie

                    ed williams
                    Participant

                      Hi Rick, from what I have read and experienced personally, scan are the best way to tell if Pd-1 is working. Now Pd-1 drugs tend to show results faster than Ipi did, but there can be delays. I remember watching a video where  Dr. Wolchok was speaking about one of his first patients on ( ipi) showing no response on scans but said they were feeling better. They decided to keep going forward and within a short period of time the scans started to show improvement. From a personal experience I showed reduction of tumors on the first set of scan (12th week) of treatment. I didn't have a high tumor load and I wasn't experiencing physical side effect from the Melanoma before going on the study. If you are looking for more information I would recommend looking up Melanoma videos that feature the following Melanoma specialist- Dr. Wolchok, Dr. Antoni Ribas, Dr. Jeffrey Weber, Dr. Omid Hamid, Dr. Mario Sznol, Dr.Suzanne Topalian. They also have videos from ASCO 2014 available that talk about Immunotherapy and Melanoma. Rick, I wish you the best and hope for a positive response to treatments for your wife. Ed

                      ed williams
                      Participant

                        Hi Rick, from what I have read and experienced personally, scan are the best way to tell if Pd-1 is working. Now Pd-1 drugs tend to show results faster than Ipi did, but there can be delays. I remember watching a video where  Dr. Wolchok was speaking about one of his first patients on ( ipi) showing no response on scans but said they were feeling better. They decided to keep going forward and within a short period of time the scans started to show improvement. From a personal experience I showed reduction of tumors on the first set of scan (12th week) of treatment. I didn't have a high tumor load and I wasn't experiencing physical side effect from the Melanoma before going on the study. If you are looking for more information I would recommend looking up Melanoma videos that feature the following Melanoma specialist- Dr. Wolchok, Dr. Antoni Ribas, Dr. Jeffrey Weber, Dr. Omid Hamid, Dr. Mario Sznol, Dr.Suzanne Topalian. They also have videos from ASCO 2014 available that talk about Immunotherapy and Melanoma. Rick, I wish you the best and hope for a positive response to treatments for your wife. Ed

                        ed williams
                        Participant

                          Hi Rick, from what I have read and experienced personally, scan are the best way to tell if Pd-1 is working. Now Pd-1 drugs tend to show results faster than Ipi did, but there can be delays. I remember watching a video where  Dr. Wolchok was speaking about one of his first patients on ( ipi) showing no response on scans but said they were feeling better. They decided to keep going forward and within a short period of time the scans started to show improvement. From a personal experience I showed reduction of tumors on the first set of scan (12th week) of treatment. I didn't have a high tumor load and I wasn't experiencing physical side effect from the Melanoma before going on the study. If you are looking for more information I would recommend looking up Melanoma videos that feature the following Melanoma specialist- Dr. Wolchok, Dr. Antoni Ribas, Dr. Jeffrey Weber, Dr. Omid Hamid, Dr. Mario Sznol, Dr.Suzanne Topalian. They also have videos from ASCO 2014 available that talk about Immunotherapy and Melanoma. Rick, I wish you the best and hope for a positive response to treatments for your wife. Ed

                          rick1981
                          Participant

                            Thanks all. Guess we'll have to wait and see, she has just had 3 Pembro treatments so far. It's just that LDH went down right away but now it's going up and she had a seizure (see other topic) so we're getting nervous it may not work after all.

                            And yes I read about the delayed reponse and new mets occuring even for patients with a durable response, it's just really scary when you're in the middle of it.

                            Finally, has anyone gone from PD1 to Yervoy/IPI? I know it's usually the other way around πŸ™‚

                              Bubbles
                              Participant

                                I have not had yervoy at all.  However, in my trial with two arms (resected and non….Stage IV) Weber has told me of patients who failed nivo, which he then placed on ipi.  At one point…he specifically placed 4 on ipi after failing nivo and 2 responded.  In other discussions he allowed that he thought that was a reasonable plan and it might even be his best recommendation for me should I recur.  For what it's worth…. 

                                Hugs to you and your wife.  Celeste

                                Bubbles
                                Participant

                                  I have not had yervoy at all.  However, in my trial with two arms (resected and non….Stage IV) Weber has told me of patients who failed nivo, which he then placed on ipi.  At one point…he specifically placed 4 on ipi after failing nivo and 2 responded.  In other discussions he allowed that he thought that was a reasonable plan and it might even be his best recommendation for me should I recur.  For what it's worth…. 

                                  Hugs to you and your wife.  Celeste

                                  Bubbles
                                  Participant

                                    I have not had yervoy at all.  However, in my trial with two arms (resected and non….Stage IV) Weber has told me of patients who failed nivo, which he then placed on ipi.  At one point…he specifically placed 4 on ipi after failing nivo and 2 responded.  In other discussions he allowed that he thought that was a reasonable plan and it might even be his best recommendation for me should I recur.  For what it's worth…. 

                                    Hugs to you and your wife.  Celeste

                                    rick1981
                                    Participant

                                      Thanks again Celeste. Do you happen to know after how many nivo treatments Dr Weber felt it was time to switch to Ipi/Yervoy?

                                      rick1981
                                      Participant

                                        Thanks again Celeste. Do you happen to know after how many nivo treatments Dr Weber felt it was time to switch to Ipi/Yervoy?

                                        Bubbles
                                        Participant

                                          No, Rick, I don't.  This trial started in 2010 and it was a learning curve for everyone…specifically coming to the realization that anti-PD1 like other immunotherapies can cause tumors to become larger before their ultimate demise.  So some of the powers that be…have been instrumental in  allowing patients to continue in the trial (and others now) longer than they did at the outset…recognizing that the initial increase in size as things are viewed on scans, may not be  real progression, as it was deemed to be at the beginning.  Sorry I have no additional info.  Hang in there.  C

                                          Bubbles
                                          Participant

                                            No, Rick, I don't.  This trial started in 2010 and it was a learning curve for everyone…specifically coming to the realization that anti-PD1 like other immunotherapies can cause tumors to become larger before their ultimate demise.  So some of the powers that be…have been instrumental in  allowing patients to continue in the trial (and others now) longer than they did at the outset…recognizing that the initial increase in size as things are viewed on scans, may not be  real progression, as it was deemed to be at the beginning.  Sorry I have no additional info.  Hang in there.  C

                                            Bubbles
                                            Participant

                                              No, Rick, I don't.  This trial started in 2010 and it was a learning curve for everyone…specifically coming to the realization that anti-PD1 like other immunotherapies can cause tumors to become larger before their ultimate demise.  So some of the powers that be…have been instrumental in  allowing patients to continue in the trial (and others now) longer than they did at the outset…recognizing that the initial increase in size as things are viewed on scans, may not be  real progression, as it was deemed to be at the beginning.  Sorry I have no additional info.  Hang in there.  C

                                              rick1981
                                              Participant

                                                Thanks again Celeste. Do you happen to know after how many nivo treatments Dr Weber felt it was time to switch to Ipi/Yervoy?

                                              rick1981
                                              Participant

                                                Thanks all. Guess we'll have to wait and see, she has just had 3 Pembro treatments so far. It's just that LDH went down right away but now it's going up and she had a seizure (see other topic) so we're getting nervous it may not work after all.

                                                And yes I read about the delayed reponse and new mets occuring even for patients with a durable response, it's just really scary when you're in the middle of it.

                                                Finally, has anyone gone from PD1 to Yervoy/IPI? I know it's usually the other way around πŸ™‚

                                                rick1981
                                                Participant

                                                  Thanks all. Guess we'll have to wait and see, she has just had 3 Pembro treatments so far. It's just that LDH went down right away but now it's going up and she had a seizure (see other topic) so we're getting nervous it may not work after all.

                                                  And yes I read about the delayed reponse and new mets occuring even for patients with a durable response, it's just really scary when you're in the middle of it.

                                                  Finally, has anyone gone from PD1 to Yervoy/IPI? I know it's usually the other way around πŸ™‚

                                                  rick1981
                                                  Participant

                                                    Sorry one more question, is there any data of after how many infusions Keytuda will work (among responders). I vaguely recall 1/3 within 2, another 1/3 after 4 and the final 1/3 after 6+…?

                                                    rick1981
                                                    Participant

                                                      Sorry one more question, is there any data of after how many infusions Keytuda will work (among responders). I vaguely recall 1/3 within 2, another 1/3 after 4 and the final 1/3 after 6+…?

                                                        Bubbles
                                                        Participant

                                                          Sorry, Rick. I haven't seen any data that specifically answers that question.  The duration and frequency of administration with which the anti-PD1 drugs should be given remains a big unanswered question.  Drug administration in my trial ended at 2 1/2 years.  Initially we were given Nivo at 1, 3 or 10mg/kg (I got 1) every 2 weeks for 6 months and then every 3 months for 2 more years.  One guy was given only the first 3 months worth of every 2 week dosing.  At his first set of every 3 month scans, he showed "progression" and was removed from the trial.  Weber continued to follow him so as to decide the best next treatment.  His tumors started shrinking!!!!  Today…with no further treatment…he remiains NED!!!! 

                                                          Best I got.  Hang in there.  c

                                                          Bubbles
                                                          Participant

                                                            Sorry, Rick. I haven't seen any data that specifically answers that question.  The duration and frequency of administration with which the anti-PD1 drugs should be given remains a big unanswered question.  Drug administration in my trial ended at 2 1/2 years.  Initially we were given Nivo at 1, 3 or 10mg/kg (I got 1) every 2 weeks for 6 months and then every 3 months for 2 more years.  One guy was given only the first 3 months worth of every 2 week dosing.  At his first set of every 3 month scans, he showed "progression" and was removed from the trial.  Weber continued to follow him so as to decide the best next treatment.  His tumors started shrinking!!!!  Today…with no further treatment…he remiains NED!!!! 

                                                            Best I got.  Hang in there.  c

                                                            Bubbles
                                                            Participant

                                                              Sorry, Rick. I haven't seen any data that specifically answers that question.  The duration and frequency of administration with which the anti-PD1 drugs should be given remains a big unanswered question.  Drug administration in my trial ended at 2 1/2 years.  Initially we were given Nivo at 1, 3 or 10mg/kg (I got 1) every 2 weeks for 6 months and then every 3 months for 2 more years.  One guy was given only the first 3 months worth of every 2 week dosing.  At his first set of every 3 month scans, he showed "progression" and was removed from the trial.  Weber continued to follow him so as to decide the best next treatment.  His tumors started shrinking!!!!  Today…with no further treatment…he remiains NED!!!! 

                                                              Best I got.  Hang in there.  c

                                                            rick1981
                                                            Participant

                                                              Sorry one more question, is there any data of after how many infusions Keytuda will work (among responders). I vaguely recall 1/3 within 2, another 1/3 after 4 and the final 1/3 after 6+…?

                                                          Viewing 14 reply threads
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byΒ MRF posting policies.

                                                          Popular Topics