Does Side Effects correspond with Better Results with Yervoy?

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  • Post
    • August 28, 2015 at 11:52 pm
    BrianP
    Participant

      So this discussion hasn't come up in a while.  Do side effects have any correlation with overall survival?  This abstract says it doesn't.  Also states that taking corticosteriods don't have an impact on overall survival.  Would be interesting to see the whole article.

       

      http://jco.ascopubs.org/content/early/2015/08/11/JCO.2015.60.8448

    Viewing 11 reply threads
    • Replies
        • August 29, 2015 at 1:09 am
        Bubbles
        Participant

          Hey Brian,

          Glad word is finally getting out that side effects don't mean too much one way or another and treating them, EVEN WITH PREDNISONE!!!, does not affect rate of response.  On the other hand, if side effects go untreated patients will suffer and may risk access to continue medications that can help them.

          Here's a review of 2 recent articles (one re: ipi and another a case with anti-PD1) reiterating that very thing:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

          However, there is some interesting research coming out about lab markers that MAY predict response to immunotherapies:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html

          Very interesting.  Will be glad when markers and their meaning can truly be relied upon when selecting the best therapy for every individual!  Celeste

           

          • August 29, 2015 at 1:09 am
          Bubbles
          Participant

            Hey Brian,

            Glad word is finally getting out that side effects don't mean too much one way or another and treating them, EVEN WITH PREDNISONE!!!, does not affect rate of response.  On the other hand, if side effects go untreated patients will suffer and may risk access to continue medications that can help them.

            Here's a review of 2 recent articles (one re: ipi and another a case with anti-PD1) reiterating that very thing:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

            However, there is some interesting research coming out about lab markers that MAY predict response to immunotherapies:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html

            Very interesting.  Will be glad when markers and their meaning can truly be relied upon when selecting the best therapy for every individual!  Celeste

             

              • August 29, 2015 at 2:52 am
              BrianP
              Participant

                Thanks Celeste.  Very cool.  I kinda remember a while back where Dr. Weber was involved with a study where it supported the notion that side effects correlated to response.  I may be remembering that wrong though. 

                Did you see my thread about my visit to see Dr. Weber last month?  He confirmed your previous statements about his thoughts that you don't need to stay on the Nivolumab for a durable response.  Time will tell I guess!

                Goodnight.

                 

                • August 29, 2015 at 2:52 am
                BrianP
                Participant

                  Thanks Celeste.  Very cool.  I kinda remember a while back where Dr. Weber was involved with a study where it supported the notion that side effects correlated to response.  I may be remembering that wrong though. 

                  Did you see my thread about my visit to see Dr. Weber last month?  He confirmed your previous statements about his thoughts that you don't need to stay on the Nivolumab for a durable response.  Time will tell I guess!

                  Goodnight.

                   

                  • August 29, 2015 at 1:36 pm
                  ed williams
                  Participant

                    Brain, I think this is the $ 1 0000 000 dollar question that so many of us on trials are waiting for. Checkmate 67 is coming to an end for me in January and at that point I believe we have the option of staying on Nivo. Bristol Myer Squibb has not given out much in the way of information about what they will offer to the trial participants. Wishing you the best!!! Ed

                    • August 29, 2015 at 2:40 pm
                    Bubbles
                    Participant

                      Hey guys! Yeah, Brian…I saw your post just a bit ago. Yes…Weber has been adamant in his belief that only a quantified amount of anti-PD1 is needed to gain and MAINTAIN a response. He seems to think that even partial responders will be held in check…even after stopping meds. Of course, only time will tell – and what that precise "quantity" is (both in mg's and duration) remains unclear. Hope BMS comes through for you guys, Ed….if continued infusions is what you want to do. They had intimated to Weber that they would allow those of us who wished to continue nivo beyond our 2 1/2 years to do so. But, when it came down to it…they did NOT! On the good side, I'm still here (I think that's a good thing….though there may be some who would beg to differ! Hee hee!) having had my last nivo infusion in June of 2013. Scans are next week so we'll see what the cat drags in with that!  Hugs to you both! C

                      • August 29, 2015 at 2:40 pm
                      Bubbles
                      Participant

                        Hey guys! Yeah, Brian…I saw your post just a bit ago. Yes…Weber has been adamant in his belief that only a quantified amount of anti-PD1 is needed to gain and MAINTAIN a response. He seems to think that even partial responders will be held in check…even after stopping meds. Of course, only time will tell – and what that precise "quantity" is (both in mg's and duration) remains unclear. Hope BMS comes through for you guys, Ed….if continued infusions is what you want to do. They had intimated to Weber that they would allow those of us who wished to continue nivo beyond our 2 1/2 years to do so. But, when it came down to it…they did NOT! On the good side, I'm still here (I think that's a good thing….though there may be some who would beg to differ! Hee hee!) having had my last nivo infusion in June of 2013. Scans are next week so we'll see what the cat drags in with that!  Hugs to you both! C

                        • August 29, 2015 at 2:40 pm
                        Bubbles
                        Participant

                          Hey guys! Yeah, Brian…I saw your post just a bit ago. Yes…Weber has been adamant in his belief that only a quantified amount of anti-PD1 is needed to gain and MAINTAIN a response. He seems to think that even partial responders will be held in check…even after stopping meds. Of course, only time will tell – and what that precise "quantity" is (both in mg's and duration) remains unclear. Hope BMS comes through for you guys, Ed….if continued infusions is what you want to do. They had intimated to Weber that they would allow those of us who wished to continue nivo beyond our 2 1/2 years to do so. But, when it came down to it…they did NOT! On the good side, I'm still here (I think that's a good thing….though there may be some who would beg to differ! Hee hee!) having had my last nivo infusion in June of 2013. Scans are next week so we'll see what the cat drags in with that!  Hugs to you both! C

                          • August 29, 2015 at 1:36 pm
                          ed williams
                          Participant

                            Brain, I think this is the $ 1 0000 000 dollar question that so many of us on trials are waiting for. Checkmate 67 is coming to an end for me in January and at that point I believe we have the option of staying on Nivo. Bristol Myer Squibb has not given out much in the way of information about what they will offer to the trial participants. Wishing you the best!!! Ed

                            • August 29, 2015 at 1:36 pm
                            ed williams
                            Participant

                              Brain, I think this is the $ 1 0000 000 dollar question that so many of us on trials are waiting for. Checkmate 67 is coming to an end for me in January and at that point I believe we have the option of staying on Nivo. Bristol Myer Squibb has not given out much in the way of information about what they will offer to the trial participants. Wishing you the best!!! Ed

                              • August 29, 2015 at 2:52 am
                              BrianP
                              Participant

                                Thanks Celeste.  Very cool.  I kinda remember a while back where Dr. Weber was involved with a study where it supported the notion that side effects correlated to response.  I may be remembering that wrong though. 

                                Did you see my thread about my visit to see Dr. Weber last month?  He confirmed your previous statements about his thoughts that you don't need to stay on the Nivolumab for a durable response.  Time will tell I guess!

                                Goodnight.

                                 

                                • September 1, 2015 at 1:06 am
                                mrsaxde
                                Participant

                                  After reading your post, and then reading the abstract about eosinophil levels, I decided to pull out my recent blood tests. I hope that they're onto something about eosinophils as a predictor of response and durability. In mid-July, just before my first Keytruda infusion, my eosinophil level was 3.3. Two weeks following that infusion, it shot up to 5.8. Last week it was at 5.7.

                                  • September 1, 2015 at 1:06 am
                                  mrsaxde
                                  Participant

                                    After reading your post, and then reading the abstract about eosinophil levels, I decided to pull out my recent blood tests. I hope that they're onto something about eosinophils as a predictor of response and durability. In mid-July, just before my first Keytruda infusion, my eosinophil level was 3.3. Two weeks following that infusion, it shot up to 5.8. Last week it was at 5.7.

                                    • September 1, 2015 at 1:06 am
                                    mrsaxde
                                    Participant

                                      After reading your post, and then reading the abstract about eosinophil levels, I decided to pull out my recent blood tests. I hope that they're onto something about eosinophils as a predictor of response and durability. In mid-July, just before my first Keytruda infusion, my eosinophil level was 3.3. Two weeks following that infusion, it shot up to 5.8. Last week it was at 5.7.

                                    • August 29, 2015 at 1:09 am
                                    Bubbles
                                    Participant

                                      Hey Brian,

                                      Glad word is finally getting out that side effects don't mean too much one way or another and treating them, EVEN WITH PREDNISONE!!!, does not affect rate of response.  On the other hand, if side effects go untreated patients will suffer and may risk access to continue medications that can help them.

                                      Here's a review of 2 recent articles (one re: ipi and another a case with anti-PD1) reiterating that very thing:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

                                      However, there is some interesting research coming out about lab markers that MAY predict response to immunotherapies:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html

                                      Very interesting.  Will be glad when markers and their meaning can truly be relied upon when selecting the best therapy for every individual!  Celeste

                                       

                                      • August 29, 2015 at 3:49 pm
                                      Bubbles
                                      Participant

                                        PS…..of course there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                                        In this 2015 article,vitiligo and itching were very much related to longer "progression free intervals" for patients on pembro. 

                                        "Survival analyses showed that patients who developed cutaneous AE's had significantly longer progression-free intervals in all 3 treatment dosage groups, compared to patients who did not develop cutaneous AE's."

                                        However, the article you posted was about "immunological" effects and ipi…so…..who knows????  c

                                        • August 29, 2015 at 3:49 pm
                                        Bubbles
                                        Participant

                                          PS…..of course there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                                          In this 2015 article,vitiligo and itching were very much related to longer "progression free intervals" for patients on pembro. 

                                          "Survival analyses showed that patients who developed cutaneous AE's had significantly longer progression-free intervals in all 3 treatment dosage groups, compared to patients who did not develop cutaneous AE's."

                                          However, the article you posted was about "immunological" effects and ipi…so…..who knows????  c

                                          • August 29, 2015 at 3:49 pm
                                          Bubbles
                                          Participant

                                            PS…..of course there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

                                            In this 2015 article,vitiligo and itching were very much related to longer "progression free intervals" for patients on pembro. 

                                            "Survival analyses showed that patients who developed cutaneous AE's had significantly longer progression-free intervals in all 3 treatment dosage groups, compared to patients who did not develop cutaneous AE's."

                                            However, the article you posted was about "immunological" effects and ipi…so…..who knows????  c

                                            • August 29, 2015 at 9:15 pm
                                            Polymath
                                            Participant

                                              Hi Brian,

                                              I had posed this question a few weeks ago and had responses from Celeste and Artie.  My take-away was that most likely, there is no direct correlation.  It  appears its like so many of these treatments, that different people just respond differently.  I was hoping for a broader response though.  More folks chiming in on their experiences.  I have been a mostly non-responder to everything but my very first drug treatment which delivered devastating side-effects, but worked, albeit a short time.  All the treatments thereafter, including TAF/MEK, Yervoy, and Keytruda have all had little to no side effects and were also not effective.  I'm in trials now as that's all that's left for now.

                                              Aloha,

                                              Gary

                                                • August 30, 2015 at 1:39 am
                                                tschmith
                                                Participant

                                                  I will have my first scans on September 8th after reaching NED in June.  I was on Pembro/Keytruda for a year and discontinued infusions when my PET came back clear. When I began Keytruda, I responded in the first 9 days with a large soft tissue mass rapidly shrinking.  My side effects were fever, itchy rash and after about the third infusion, Vitiigo. I'm now the whitest person on the planet!!!!  haha!  My freckles disappeared, white patches showed up here and there, especially around my eyes, and my eyebrows and eyelashes turned snow white in a very short period of time.  Of course I'm hoping for good results on the 8th.  We'll see!!!!

                                                  Terrie

                                                  • August 31, 2015 at 12:44 am
                                                  BrianP
                                                  Participant

                                                    Your response has been incredible Terrie.  Makes me wonder if the other treatments you had played a role in your response. 

                                                    Brian

                                                    • August 31, 2015 at 12:44 am
                                                    BrianP
                                                    Participant

                                                      Your response has been incredible Terrie.  Makes me wonder if the other treatments you had played a role in your response. 

                                                      Brian

                                                      • August 31, 2015 at 12:44 am
                                                      BrianP
                                                      Participant

                                                        Your response has been incredible Terrie.  Makes me wonder if the other treatments you had played a role in your response. 

                                                        Brian

                                                        • August 30, 2015 at 1:39 am
                                                        tschmith
                                                        Participant

                                                          I will have my first scans on September 8th after reaching NED in June.  I was on Pembro/Keytruda for a year and discontinued infusions when my PET came back clear. When I began Keytruda, I responded in the first 9 days with a large soft tissue mass rapidly shrinking.  My side effects were fever, itchy rash and after about the third infusion, Vitiigo. I'm now the whitest person on the planet!!!!  haha!  My freckles disappeared, white patches showed up here and there, especially around my eyes, and my eyebrows and eyelashes turned snow white in a very short period of time.  Of course I'm hoping for good results on the 8th.  We'll see!!!!

                                                          Terrie

                                                          • August 30, 2015 at 1:39 am
                                                          tschmith
                                                          Participant

                                                            I will have my first scans on September 8th after reaching NED in June.  I was on Pembro/Keytruda for a year and discontinued infusions when my PET came back clear. When I began Keytruda, I responded in the first 9 days with a large soft tissue mass rapidly shrinking.  My side effects were fever, itchy rash and after about the third infusion, Vitiigo. I'm now the whitest person on the planet!!!!  haha!  My freckles disappeared, white patches showed up here and there, especially around my eyes, and my eyebrows and eyelashes turned snow white in a very short period of time.  Of course I'm hoping for good results on the 8th.  We'll see!!!!

                                                            Terrie

                                                          • August 29, 2015 at 9:15 pm
                                                          Polymath
                                                          Participant

                                                            Hi Brian,

                                                            I had posed this question a few weeks ago and had responses from Celeste and Artie.  My take-away was that most likely, there is no direct correlation.  It  appears its like so many of these treatments, that different people just respond differently.  I was hoping for a broader response though.  More folks chiming in on their experiences.  I have been a mostly non-responder to everything but my very first drug treatment which delivered devastating side-effects, but worked, albeit a short time.  All the treatments thereafter, including TAF/MEK, Yervoy, and Keytruda have all had little to no side effects and were also not effective.  I'm in trials now as that's all that's left for now.

                                                            Aloha,

                                                            Gary

                                                            • August 29, 2015 at 9:15 pm
                                                            Polymath
                                                            Participant

                                                              Hi Brian,

                                                              I had posed this question a few weeks ago and had responses from Celeste and Artie.  My take-away was that most likely, there is no direct correlation.  It  appears its like so many of these treatments, that different people just respond differently.  I was hoping for a broader response though.  More folks chiming in on their experiences.  I have been a mostly non-responder to everything but my very first drug treatment which delivered devastating side-effects, but worked, albeit a short time.  All the treatments thereafter, including TAF/MEK, Yervoy, and Keytruda have all had little to no side effects and were also not effective.  I'm in trials now as that's all that's left for now.

                                                              Aloha,

                                                              Gary

                                                              • September 1, 2015 at 10:34 pm
                                                              Jubes
                                                              Participant

                                                                I had to stop keytruda after almost a year and coping with side effects till I couldn't stand the pain anymore(poly myalgia) I have been on prednisone since April and now am taking 25mg a day until the drug washes out and hopefully pain subsides. My last keytruda was on August 7 so I am hoping the drug is washing out now.  Can anyone tell me their experience of how long that takes? Perhaps someone who had colitis could tell me how long they were on steroids for that? I believe keytruda has a 6 week half life so I am hoping that at 12 weeks I should be able to reduce the prednisone and be able to see from my bloods how affected my pituatry and adrenal glands are. Also get back to pain free hopefully. I am very optimistic that keytruda has done its job. But will post results from my pets in September and December. Good luck with your scans celeste!

                                                                  • September 2, 2015 at 12:27 am
                                                                  _Paul_
                                                                  Participant

                                                                    I just had this covers action today with my onc. He said the half life of Keytruda is 12 days and it take 6 half lives for a complete wash out.

                                                                    • September 2, 2015 at 12:27 am
                                                                    _Paul_
                                                                    Participant

                                                                      I just had this covers action today with my onc. He said the half life of Keytruda is 12 days and it take 6 half lives for a complete wash out.

                                                                      • September 2, 2015 at 12:27 am
                                                                      _Paul_
                                                                      Participant

                                                                        I just had this covers action today with my onc. He said the half life of Keytruda is 12 days and it take 6 half lives for a complete wash out.

                                                                      • September 1, 2015 at 10:34 pm
                                                                      Jubes
                                                                      Participant

                                                                        I had to stop keytruda after almost a year and coping with side effects till I couldn't stand the pain anymore(poly myalgia) I have been on prednisone since April and now am taking 25mg a day until the drug washes out and hopefully pain subsides. My last keytruda was on August 7 so I am hoping the drug is washing out now.  Can anyone tell me their experience of how long that takes? Perhaps someone who had colitis could tell me how long they were on steroids for that? I believe keytruda has a 6 week half life so I am hoping that at 12 weeks I should be able to reduce the prednisone and be able to see from my bloods how affected my pituatry and adrenal glands are. Also get back to pain free hopefully. I am very optimistic that keytruda has done its job. But will post results from my pets in September and December. Good luck with your scans celeste!

                                                                        • September 1, 2015 at 10:34 pm
                                                                        Jubes
                                                                        Participant

                                                                          I had to stop keytruda after almost a year and coping with side effects till I couldn't stand the pain anymore(poly myalgia) I have been on prednisone since April and now am taking 25mg a day until the drug washes out and hopefully pain subsides. My last keytruda was on August 7 so I am hoping the drug is washing out now.  Can anyone tell me their experience of how long that takes? Perhaps someone who had colitis could tell me how long they were on steroids for that? I believe keytruda has a 6 week half life so I am hoping that at 12 weeks I should be able to reduce the prednisone and be able to see from my bloods how affected my pituatry and adrenal glands are. Also get back to pain free hopefully. I am very optimistic that keytruda has done its job. But will post results from my pets in September and December. Good luck with your scans celeste!

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