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need words on encouragement

Forums General Melanoma Community need words on encouragement

  • Post
    sharmon
    Participant
      The Merck Anti pd 1 trial is allowing the tumor in his lung and side to enlarge, the pain to increase, and the anxiety to rise. This is less than half way through the trial and no one seems concerned. They are staying the course of the the third infusion on the 26th . They are saying it is too soon toknow for sure if it is growth or inflamation. Please pray this works like it is designed .

      The Merck Anti pd 1 trial is allowing the tumor in his lung and side to enlarge, the pain to increase, and the anxiety to rise. This is less than half way through the trial and no one seems concerned. They are staying the course of the the third infusion on the 26th . They are saying it is too soon toknow for sure if it is growth or inflamation. Please pray this works like it is designed .

    Viewing 14 reply threads
    • Replies
        jim Breitfeller
        Participant

          S. Harman,

          They could analyze the Absolute Lymphocyte counts (ALC) {blood test} and see if they have increased at least 2 fold. This increase would tell them that your husband may be clinically benefitting the Anti-PD-1 therapy.

           

          Best regards,

           

          Jimmy b

            sharmon
            Participant
              I want to do this. How hard would it be to get dr weber to order this test and id not can i get it done through a general dr. Or our friend who is a dematogist.
              killmel
              Participant

                I am a complete responder on Merck PD1 trial…any my ALC count has not changed so I do not thnik that ALC is a indicator of whether or not you are responding to the drug. However, it is a good idea to verify with Dr. Weber. Please let us know what Dr. Weber says about ALC counts as an indicator.

                killmel
                Participant

                  I am a complete responder on Merck PD1 trial…any my ALC count has not changed so I do not thnik that ALC is a indicator of whether or not you are responding to the drug. However, it is a good idea to verify with Dr. Weber. Please let us know what Dr. Weber says about ALC counts as an indicator.

                  sharmon
                  Participant
                    Spoke with Dr W and the ALC was an indicator with IPI, but not with Anti PD1. As of now the are no indicators to indicate weather or not someone is or will rspond.
                    sharmon
                    Participant
                      Spoke with Dr W and the ALC was an indicator with IPI, but not with Anti PD1. As of now the are no indicators to indicate weather or not someone is or will rspond.
                      sharmon
                      Participant
                        Spoke with Dr W and the ALC was an indicator with IPI, but not with Anti PD1. As of now the are no indicators to indicate weather or not someone is or will rspond.
                        killmel
                        Participant

                          I am a complete responder on Merck PD1 trial…any my ALC count has not changed so I do not thnik that ALC is a indicator of whether or not you are responding to the drug. However, it is a good idea to verify with Dr. Weber. Please let us know what Dr. Weber says about ALC counts as an indicator.

                          sharmon
                          Participant
                            I want to do this. How hard would it be to get dr weber to order this test and id not can i get it done through a general dr. Or our friend who is a dematogist.
                            sharmon
                            Participant
                              I want to do this. How hard would it be to get dr weber to order this test and id not can i get it done through a general dr. Or our friend who is a dematogist.
                              jim Breitfeller
                              Participant

                                jim Breitfeller
                                Participant

                                  PD-1 blockade augments Th1 and Th17 and suppresses Th2 responses in peripheral blood from patients with prostate and advanced melanoma cancer. 

                                  2012 Feb-Mar;35(2):169-78. doi: 10.1097/CJI.0b013e318247a4e7. 

                                  Abstract

                                  Negative costimulation on T cells is exploited by both prostate cancer and melanoma to evade antitumor immunity. Blocking such mechanisms restores antitumor immunity as was demonstrated by the improved survival of patients with metastatic melanoma after treatment with an antibody blocking the CTLA-4 inhibitory receptor (ipilimumab). Enhanced expression of another inhibitory immunoreceptor, programmed death-1 (PD-1), and its ligand, PD-L1, was found to correlate with a poor prognosis in prostate cancer and melanoma. PD-1-blocking antibodies are being developed to modulate antitumor immune responses. To support preclinical and clinical development of anti-PD-1 therapy, we sought to develop biomarker assays that can detect the effect of PD-1-blocking agents in whole blood and peripheral blood mononuclear cells. In this study, we assessed the effect of PD-1 blockade in modulating super antigen (staphylococcus enterotoxin B)-induced and recall antigen (tetanus toxoid)-induced T-cell reactivity in vitro using whole blood and peripheral blood mononuclear cells from patients with advanced melanoma, prostate cancer, and healthy controls. PD-1 blockade was found to shift antigen-induced cellular reactivity toward a proinflammatory Th1/Th17 response, as evidenced by enhanced production of interferon γ, interleukin (IL)-2, tumor necrosis factor α, IL-6, and IL-17 and reduced production of the Th2 cytokines IL-5 and IL-13. It is interesting to note that suppression of Th2 responsivity was seen with whole blood cells only from patients with cancer. Taken together, we identified novel biomarker assays that might be used to determine the functional consequences of PD-1 blockade in peripheral blood cells from patients with cancer. How these assays translate to the local antitumor response remains to be established in a clinical setting. 

                                  jim Breitfeller
                                  Participant

                                      Preliminary data implicate PD-L1 expression on tumor cells as a potential predictive biomarker of response. These findings underscore the importance of the PD-1/PD-L1 pathway and support further clinical development of BMS-936558.
                                     

                                     

                                    ASCO 2012

                                    Anti-PD-1 (BMS-936558, MDX-1106) in patients with advanced solid tumors: Clinical activity, safety, and a potential biomarker for response.

                                     Print
                                     Print

                                     

                                    jim Breitfeller
                                    Participant

                                        Preliminary data implicate PD-L1 expression on tumor cells as a potential predictive biomarker of response. These findings underscore the importance of the PD-1/PD-L1 pathway and support further clinical development of BMS-936558.
                                       

                                       

                                      ASCO 2012

                                      Anti-PD-1 (BMS-936558, MDX-1106) in patients with advanced solid tumors: Clinical activity, safety, and a potential biomarker for response.

                                       Print
                                       Print

                                       

                                      jim Breitfeller
                                      Participant

                                          Preliminary data implicate PD-L1 expression on tumor cells as a potential predictive biomarker of response. These findings underscore the importance of the PD-1/PD-L1 pathway and support further clinical development of BMS-936558.
                                         

                                         

                                        ASCO 2012

                                        Anti-PD-1 (BMS-936558, MDX-1106) in patients with advanced solid tumors: Clinical activity, safety, and a potential biomarker for response.

                                         Print
                                         Print

                                         

                                        jim Breitfeller
                                        Participant

                                          PD-1 blockade augments Th1 and Th17 and suppresses Th2 responses in peripheral blood from patients with prostate and advanced melanoma cancer. 

                                          2012 Feb-Mar;35(2):169-78. doi: 10.1097/CJI.0b013e318247a4e7. 

                                          Abstract

                                          Negative costimulation on T cells is exploited by both prostate cancer and melanoma to evade antitumor immunity. Blocking such mechanisms restores antitumor immunity as was demonstrated by the improved survival of patients with metastatic melanoma after treatment with an antibody blocking the CTLA-4 inhibitory receptor (ipilimumab). Enhanced expression of another inhibitory immunoreceptor, programmed death-1 (PD-1), and its ligand, PD-L1, was found to correlate with a poor prognosis in prostate cancer and melanoma. PD-1-blocking antibodies are being developed to modulate antitumor immune responses. To support preclinical and clinical development of anti-PD-1 therapy, we sought to develop biomarker assays that can detect the effect of PD-1-blocking agents in whole blood and peripheral blood mononuclear cells. In this study, we assessed the effect of PD-1 blockade in modulating super antigen (staphylococcus enterotoxin B)-induced and recall antigen (tetanus toxoid)-induced T-cell reactivity in vitro using whole blood and peripheral blood mononuclear cells from patients with advanced melanoma, prostate cancer, and healthy controls. PD-1 blockade was found to shift antigen-induced cellular reactivity toward a proinflammatory Th1/Th17 response, as evidenced by enhanced production of interferon γ, interleukin (IL)-2, tumor necrosis factor α, IL-6, and IL-17 and reduced production of the Th2 cytokines IL-5 and IL-13. It is interesting to note that suppression of Th2 responsivity was seen with whole blood cells only from patients with cancer. Taken together, we identified novel biomarker assays that might be used to determine the functional consequences of PD-1 blockade in peripheral blood cells from patients with cancer. How these assays translate to the local antitumor response remains to be established in a clinical setting. 

                                          jim Breitfeller
                                          Participant

                                            PD-1 blockade augments Th1 and Th17 and suppresses Th2 responses in peripheral blood from patients with prostate and advanced melanoma cancer. 

                                            2012 Feb-Mar;35(2):169-78. doi: 10.1097/CJI.0b013e318247a4e7. 

                                            Abstract

                                            Negative costimulation on T cells is exploited by both prostate cancer and melanoma to evade antitumor immunity. Blocking such mechanisms restores antitumor immunity as was demonstrated by the improved survival of patients with metastatic melanoma after treatment with an antibody blocking the CTLA-4 inhibitory receptor (ipilimumab). Enhanced expression of another inhibitory immunoreceptor, programmed death-1 (PD-1), and its ligand, PD-L1, was found to correlate with a poor prognosis in prostate cancer and melanoma. PD-1-blocking antibodies are being developed to modulate antitumor immune responses. To support preclinical and clinical development of anti-PD-1 therapy, we sought to develop biomarker assays that can detect the effect of PD-1-blocking agents in whole blood and peripheral blood mononuclear cells. In this study, we assessed the effect of PD-1 blockade in modulating super antigen (staphylococcus enterotoxin B)-induced and recall antigen (tetanus toxoid)-induced T-cell reactivity in vitro using whole blood and peripheral blood mononuclear cells from patients with advanced melanoma, prostate cancer, and healthy controls. PD-1 blockade was found to shift antigen-induced cellular reactivity toward a proinflammatory Th1/Th17 response, as evidenced by enhanced production of interferon γ, interleukin (IL)-2, tumor necrosis factor α, IL-6, and IL-17 and reduced production of the Th2 cytokines IL-5 and IL-13. It is interesting to note that suppression of Th2 responsivity was seen with whole blood cells only from patients with cancer. Taken together, we identified novel biomarker assays that might be used to determine the functional consequences of PD-1 blockade in peripheral blood cells from patients with cancer. How these assays translate to the local antitumor response remains to be established in a clinical setting. 

                                            jim Breitfeller
                                            Participant

                                              jim Breitfeller
                                              Participant

                                              jim Breitfeller
                                              Participant

                                                S. Harman,

                                                They could analyze the Absolute Lymphocyte counts (ALC) {blood test} and see if they have increased at least 2 fold. This increase would tell them that your husband may be clinically benefitting the Anti-PD-1 therapy.

                                                 

                                                Best regards,

                                                 

                                                Jimmy b

                                                jim Breitfeller
                                                Participant

                                                  S. Harman,

                                                  They could analyze the Absolute Lymphocyte counts (ALC) {blood test} and see if they have increased at least 2 fold. This increase would tell them that your husband may be clinically benefitting the Anti-PD-1 therapy.

                                                   

                                                  Best regards,

                                                   

                                                  Jimmy b

                                                  aldakota22
                                                  Participant

                                                    As hard as it is you have to trust your doctors .They are honest in their assesment of the treatment and have seen many cases respond .I will be praying that this is the case for both of you.Beat the Beast.  Al

                                                    aldakota22
                                                    Participant

                                                      As hard as it is you have to trust your doctors .They are honest in their assesment of the treatment and have seen many cases respond .I will be praying that this is the case for both of you.Beat the Beast.  Al

                                                      aldakota22
                                                      Participant

                                                        As hard as it is you have to trust your doctors .They are honest in their assesment of the treatment and have seen many cases respond .I will be praying that this is the case for both of you.Beat the Beast.  Al

                                                        POW
                                                        Participant

                                                          Oh, gosh! This must be so hard for both of you! The waiting, the uncertainty, the anxiety, the hope… I am so sorry that you have to go through this!

                                                          My brother's oncologist did say that immune-based treatments like ipi and anti-PD-1 can make temporarily make tumors larger and more sensitive as the T-cells surround and attack the tumor cells. And I have read in a couple of places that most oncologists advise waiting 12 weeks to determine whether or not an immune-based treatment is working. Oh, but such an agonizing 12 weeks! 

                                                          Dr. Weber is one of the best and most experienced oncologists in the world when it comes to immune-based therapies. Trust his judgement. Hold onto your hope and optimism. Nobody really knows yet what is going on. For all you know, the treatment IS working!

                                                          From all the reading I have done lately about clinical trials, anti-PD-1 is still the most promising treatment out there. Try to be patient. If you find comfort in prayer, do that. Distract youselves as much as possible with happier thoughts. And keep reaching out here for support. 

                                                          POW
                                                          Participant

                                                            Oh, gosh! This must be so hard for both of you! The waiting, the uncertainty, the anxiety, the hope… I am so sorry that you have to go through this!

                                                            My brother's oncologist did say that immune-based treatments like ipi and anti-PD-1 can make temporarily make tumors larger and more sensitive as the T-cells surround and attack the tumor cells. And I have read in a couple of places that most oncologists advise waiting 12 weeks to determine whether or not an immune-based treatment is working. Oh, but such an agonizing 12 weeks! 

                                                            Dr. Weber is one of the best and most experienced oncologists in the world when it comes to immune-based therapies. Trust his judgement. Hold onto your hope and optimism. Nobody really knows yet what is going on. For all you know, the treatment IS working!

                                                            From all the reading I have done lately about clinical trials, anti-PD-1 is still the most promising treatment out there. Try to be patient. If you find comfort in prayer, do that. Distract youselves as much as possible with happier thoughts. And keep reaching out here for support. 

                                                              sharmon
                                                              Participant
                                                                Dear Pow
                                                                Thank you 4. Replying. Brent had a tumor and his liver and found doctor Woodrum in Rochester!: Minnesota. and Brent came home within days.
                                                                sharmon
                                                                Participant
                                                                  Dear Pow
                                                                  Thank you 4. Replying. Brent had a tumor and his liver and found doctor Woodrum in Rochester!: Minnesota. and Brent came home within days.
                                                                  sharmon
                                                                  Participant
                                                                    Dear Pow
                                                                    Thank you 4. Replying. Brent had a tumor and his liver and found doctor Woodrum in Rochester!: Minnesota. and Brent came home within days.
                                                                  POW
                                                                  Participant

                                                                    Oh, gosh! This must be so hard for both of you! The waiting, the uncertainty, the anxiety, the hope… I am so sorry that you have to go through this!

                                                                    My brother's oncologist did say that immune-based treatments like ipi and anti-PD-1 can make temporarily make tumors larger and more sensitive as the T-cells surround and attack the tumor cells. And I have read in a couple of places that most oncologists advise waiting 12 weeks to determine whether or not an immune-based treatment is working. Oh, but such an agonizing 12 weeks! 

                                                                    Dr. Weber is one of the best and most experienced oncologists in the world when it comes to immune-based therapies. Trust his judgement. Hold onto your hope and optimism. Nobody really knows yet what is going on. For all you know, the treatment IS working!

                                                                    From all the reading I have done lately about clinical trials, anti-PD-1 is still the most promising treatment out there. Try to be patient. If you find comfort in prayer, do that. Distract youselves as much as possible with happier thoughts. And keep reaching out here for support. 

                                                                    awillett1991
                                                                    Participant
                                                                      I will pray for you. Hang in there and keep fighting!

                                                                      Amy

                                                                      awillett1991
                                                                      Participant
                                                                        I will pray for you. Hang in there and keep fighting!

                                                                        Amy

                                                                        awillett1991
                                                                        Participant
                                                                          I will pray for you. Hang in there and keep fighting!

                                                                          Amy

                                                                          Josh
                                                                          Participant

                                                                            Hey sharmon,

                                                                             

                                                                            It sounds like your husband and I are in the same boat. I'm due to get my third infusion later this week, although I've been getting a lot worse since I started Merck's anti pd-1 trial. I'm not yet sure whether my doctors and I will decide to stick with the trial. One thing I can say in terms of encouragement is that my oncologist told me a story about one of their patients who had increased pain in their hip tumor after the first 2 or 3 treatments, but before stopping the trial they did a scan which showed that the pain was just caused by inflamation and, in fact, other turmors in the patients's body had begun to shrink. Obviously every case is different, but there is apparently some precedent for this drug seeming as though it isn't working when in fact it is. 

                                                                             

                                                                            Best of luck!

                                                                             

                                                                            Josh

                                                                              sharmon
                                                                              Participant
                                                                                Thanks Josh. Where are you being treated?
                                                                                sharmon
                                                                                Participant
                                                                                  Thanks Josh. Where are you being treated?
                                                                                  Josh
                                                                                  Participant

                                                                                    Sloan Kettering with Dr. Jedd Wolchok.

                                                                                    NYKaren
                                                                                    Participant
                                                                                      Hi Sharmon,
                                                                                      Just want you to know I’m thinking of you guys.
                                                                                      Waiting can be the hardest thing.
                                                                                      Warm wishes,
                                                                                      Karen
                                                                                      NYKaren
                                                                                      Participant
                                                                                        Hi Sharmon,
                                                                                        Just want you to know I’m thinking of you guys.
                                                                                        Waiting can be the hardest thing.
                                                                                        Warm wishes,
                                                                                        Karen
                                                                                        NYKaren
                                                                                        Participant
                                                                                          Hi Sharmon,
                                                                                          Just want you to know I’m thinking of you guys.
                                                                                          Waiting can be the hardest thing.
                                                                                          Warm wishes,
                                                                                          Karen
                                                                                          Josh
                                                                                          Participant

                                                                                            Sloan Kettering with Dr. Jedd Wolchok.

                                                                                            Josh
                                                                                            Participant

                                                                                              Sloan Kettering with Dr. Jedd Wolchok.

                                                                                              sharmon
                                                                                              Participant
                                                                                                Thanks Josh. Where are you being treated?
                                                                                              Josh
                                                                                              Participant

                                                                                                Hey sharmon,

                                                                                                 

                                                                                                It sounds like your husband and I are in the same boat. I'm due to get my third infusion later this week, although I've been getting a lot worse since I started Merck's anti pd-1 trial. I'm not yet sure whether my doctors and I will decide to stick with the trial. One thing I can say in terms of encouragement is that my oncologist told me a story about one of their patients who had increased pain in their hip tumor after the first 2 or 3 treatments, but before stopping the trial they did a scan which showed that the pain was just caused by inflamation and, in fact, other turmors in the patients's body had begun to shrink. Obviously every case is different, but there is apparently some precedent for this drug seeming as though it isn't working when in fact it is. 

                                                                                                 

                                                                                                Best of luck!

                                                                                                 

                                                                                                Josh

                                                                                                Josh
                                                                                                Participant

                                                                                                  Hey sharmon,

                                                                                                   

                                                                                                  It sounds like your husband and I are in the same boat. I'm due to get my third infusion later this week, although I've been getting a lot worse since I started Merck's anti pd-1 trial. I'm not yet sure whether my doctors and I will decide to stick with the trial. One thing I can say in terms of encouragement is that my oncologist told me a story about one of their patients who had increased pain in their hip tumor after the first 2 or 3 treatments, but before stopping the trial they did a scan which showed that the pain was just caused by inflamation and, in fact, other turmors in the patients's body had begun to shrink. Obviously every case is different, but there is apparently some precedent for this drug seeming as though it isn't working when in fact it is. 

                                                                                                   

                                                                                                  Best of luck!

                                                                                                   

                                                                                                  Josh

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