need words on encouragement
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need words on encouragement

› Forums › General Melanoma Community › need words on encouragement

  • Post
    • December 17, 2012 at 6:16 pm
    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
      • December 17, 2012 at 6:36 pm
      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

      • December 17, 2012 at 6:36 pm
      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

        • December 17, 2012 at 6:40 pm
        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.
        • December 17, 2012 at 6:40 pm
        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.
        • December 17, 2012 at 6:54 pm
        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.

        • December 17, 2012 at 6:54 pm
        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.

        • December 17, 2012 at 10:41 pm
        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.
        • December 17, 2012 at 10:41 pm
        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.
        • December 17, 2012 at 10:41 pm
        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.
        • December 17, 2012 at 6:54 pm
        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.

        • December 17, 2012 at 6:40 pm
        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.
        • December 18, 2012 at 1:25 pm
        jim Breitfeller
        Participant

        • December 18, 2012 at 1:25 pm
        jim Breitfeller
        Participant

        • December 18, 2012 at 2:52 pm
        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. 

        • December 18, 2012 at 2:52 pm
        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. 

        • December 18, 2012 at 3:02 pm
        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

         

        • December 18, 2012 at 3:02 pm
        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

         

        • December 18, 2012 at 3:02 pm
        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

         

        • December 18, 2012 at 2:52 pm
        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. 

        • December 18, 2012 at 1:25 pm
        jim Breitfeller
        Participant

      • December 17, 2012 at 6:36 pm
      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

      • December 17, 2012 at 7:42 pm
      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

      • December 17, 2012 at 7:42 pm
      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

      • December 17, 2012 at 7:42 pm
      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

      • December 17, 2012 at 7:58 pm
      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. 

      • December 17, 2012 at 7:58 pm
      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. 

      • December 17, 2012 at 7:58 pm
      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. 

        • December 17, 2012 at 8:43 pm
        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.
        • December 17, 2012 at 8:43 pm
        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.
        • December 17, 2012 at 8:43 pm
        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.
      • December 17, 2012 at 8:34 pm
      awillett1991
      Participant
      I will pray for you. Hang in there and keep fighting!

      Amy

      • December 17, 2012 at 8:34 pm
      awillett1991
      Participant
      I will pray for you. Hang in there and keep fighting!

      Amy

      • December 17, 2012 at 8:34 pm
      awillett1991
      Participant
      I will pray for you. Hang in there and keep fighting!

      Amy

      • December 17, 2012 at 8:42 pm
      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

        • December 17, 2012 at 10:36 pm
        sharmon
        Participant
        Thanks Josh. Where are you being treated?
        • December 17, 2012 at 10:51 pm
        Josh
        Participant

        Sloan Kettering with Dr. Jedd Wolchok.

        • December 18, 2012 at 3:26 am
        NYKaren
        Participant
        Hi Sharmon,
        Just want you to know I’m thinking of you guys.
        Waiting can be the hardest thing.
        Warm wishes,
        Karen
        • December 18, 2012 at 3:26 am
        NYKaren
        Participant
        Hi Sharmon,
        Just want you to know I’m thinking of you guys.
        Waiting can be the hardest thing.
        Warm wishes,
        Karen
        • December 18, 2012 at 3:26 am
        NYKaren
        Participant
        Hi Sharmon,
        Just want you to know I’m thinking of you guys.
        Waiting can be the hardest thing.
        Warm wishes,
        Karen
        • December 17, 2012 at 10:51 pm
        Josh
        Participant

        Sloan Kettering with Dr. Jedd Wolchok.

        • December 17, 2012 at 10:51 pm
        Josh
        Participant

        Sloan Kettering with Dr. Jedd Wolchok.

        • December 17, 2012 at 10:36 pm
        sharmon
        Participant
        Thanks Josh. Where are you being treated?
        • December 17, 2012 at 10:36 pm
        sharmon
        Participant
        Thanks Josh. Where are you being treated?
      • December 17, 2012 at 8:42 pm
      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

      • December 17, 2012 at 8:42 pm
      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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