Good scans/need advice
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Good scans/need advice

› Forums › General Melanoma Community › Good scans/need advice

  • Post
    • February 21, 2014 at 6:55 pm
    Maureen038
    Participant

    My husband is on the ipi/nivolumbab trial in Pittsburg. Since his third infusion the first week of December, he developed hemolytic anemia probably due to Yervoy. He hasn't had any drugs since except steroids which he has been off of for almost three weeks. His hemoglobin level is 11.6 now which is great. His scans were stable. Two lung nodules grew a few mm while two lung nodules shrank a few mm. That's great news considering he's been off the drugs for almost three months. We are waiting to hear if he can start nivolumbab next week which he would receive every two weeks for 48 weeks as part of the phase one trial.

    My concern is that Bill has been tested for PD1 expression and it's negative. I know that about 25 percent of people who don't have the expression respond well, but what if he doesn't? We have already been told that it wouldn't be safe for him to have yervoy again. Being Braf wild type, it terrifies me what drugs are left. He has done HD interferon and the ACT at NIH. Any advice would be appreciated. Thank you for your support!

    Maureen

Viewing 5 reply threads
  • Replies
      • February 21, 2014 at 8:49 pm
      jim Breitfeller
      Participant

      Maureen,

      if your husband progresses, you might want to ask Dr. Kirkwood about hd IL-2.

      jimmy b

      • February 21, 2014 at 8:49 pm
      jim Breitfeller
      Participant

      Maureen,

      if your husband progresses, you might want to ask Dr. Kirkwood about hd IL-2.

      jimmy b

      • February 21, 2014 at 8:49 pm
      jim Breitfeller
      Participant

      Maureen,

      if your husband progresses, you might want to ask Dr. Kirkwood about hd IL-2.

      jimmy b

      • February 21, 2014 at 9:45 pm
      POW
      Participant

      We're beginning to hear more and more good things about antibody-drug conjugates (ADCs) which are now in clinical trials. For a nice, simple overview check out: http://www.gene.com/stories/understanding-antibody-drug-conjugates

      If he is BRAF negative and has severe reactions to checkpoint therapies, you might check out ADC. Sarah Cannon in Nashville is one location for them.  

        • February 21, 2014 at 11:04 pm
        Maureen038
        Participant

        Thank you Jim and Pat for your advice! I hate the waiting game. 🙁  We already have made appointments with Dr. Atkins and Dr. Venna for advice too. Pat, he is Braf negative. I will be praying that Bill is one of the lucky ones to respond to nivolumbab. Maybe both of you can answer this question for me. When he had ACT at NIH and they grew billions of TIL cells, don't TIL cells have pd1 on them?

        Maureen

        • February 21, 2014 at 11:04 pm
        Maureen038
        Participant

        Thank you Jim and Pat for your advice! I hate the waiting game. 🙁  We already have made appointments with Dr. Atkins and Dr. Venna for advice too. Pat, he is Braf negative. I will be praying that Bill is one of the lucky ones to respond to nivolumbab. Maybe both of you can answer this question for me. When he had ACT at NIH and they grew billions of TIL cells, don't TIL cells have pd1 on them?

        Maureen

        • February 21, 2014 at 11:04 pm
        Maureen038
        Participant

        Thank you Jim and Pat for your advice! I hate the waiting game. 🙁  We already have made appointments with Dr. Atkins and Dr. Venna for advice too. Pat, he is Braf negative. I will be praying that Bill is one of the lucky ones to respond to nivolumbab. Maybe both of you can answer this question for me. When he had ACT at NIH and they grew billions of TIL cells, don't TIL cells have pd1 on them?

        Maureen

        • February 22, 2014 at 3:37 pm
        jim Breitfeller
        Participant

        When the T-cells are activated, the PD-1 & CTLA-4 receptors migrate to the surface of the cells. These receptors bind with other proteins to shut down the immune response. The antibodies of the pd1 & ctla-4 block this signaling.

        jimmy b

        • February 22, 2014 at 3:37 pm
        jim Breitfeller
        Participant

        When the T-cells are activated, the PD-1 & CTLA-4 receptors migrate to the surface of the cells. These receptors bind with other proteins to shut down the immune response. The antibodies of the pd1 & ctla-4 block this signaling.

        jimmy b

        • February 22, 2014 at 3:37 pm
        jim Breitfeller
        Participant

        When the T-cells are activated, the PD-1 & CTLA-4 receptors migrate to the surface of the cells. These receptors bind with other proteins to shut down the immune response. The antibodies of the pd1 & ctla-4 block this signaling.

        jimmy b

        • February 22, 2014 at 5:33 pm
        POW
        Participant

        Maureen, to add to what Jim said…

        I don't know as much about PD1/PD-L1 as I would like to. I think that  there is a webinar about it on the Melanoma International website that I will watch one day soon.

        What I do know is that when PD-L1 (L stands for "ligand") binds to PD1on the surface of  T-cells, the complex shuts down the T-cell. This is how the body keeps any and every immune response from running wild. Some melanomas are able to put PD-L1on their cell surface. When a PD1 T-cell binds to it, the T-cell shuts down. Essentially, the PD-L1 on the melanoma acts like a "cloak of invisibility" to protect the melanoma from T-cells.  

        Antibodies to PD1 bind to the PD1 on T-cells and prevent PD1 binding to PD-L1. This protects the T-cells from such shut-downs. Antibodies to PD-L1 bind to PD-L1 bearing melanoma cells and prevents PD1 from binding to PD-L1. This also protects the T-cells from shutting down. That's about all I know. 

        • February 22, 2014 at 5:33 pm
        POW
        Participant

        Maureen, to add to what Jim said…

        I don't know as much about PD1/PD-L1 as I would like to. I think that  there is a webinar about it on the Melanoma International website that I will watch one day soon.

        What I do know is that when PD-L1 (L stands for "ligand") binds to PD1on the surface of  T-cells, the complex shuts down the T-cell. This is how the body keeps any and every immune response from running wild. Some melanomas are able to put PD-L1on their cell surface. When a PD1 T-cell binds to it, the T-cell shuts down. Essentially, the PD-L1 on the melanoma acts like a "cloak of invisibility" to protect the melanoma from T-cells.  

        Antibodies to PD1 bind to the PD1 on T-cells and prevent PD1 binding to PD-L1. This protects the T-cells from such shut-downs. Antibodies to PD-L1 bind to PD-L1 bearing melanoma cells and prevents PD1 from binding to PD-L1. This also protects the T-cells from shutting down. That's about all I know. 

        • February 22, 2014 at 5:33 pm
        POW
        Participant

        Maureen, to add to what Jim said…

        I don't know as much about PD1/PD-L1 as I would like to. I think that  there is a webinar about it on the Melanoma International website that I will watch one day soon.

        What I do know is that when PD-L1 (L stands for "ligand") binds to PD1on the surface of  T-cells, the complex shuts down the T-cell. This is how the body keeps any and every immune response from running wild. Some melanomas are able to put PD-L1on their cell surface. When a PD1 T-cell binds to it, the T-cell shuts down. Essentially, the PD-L1 on the melanoma acts like a "cloak of invisibility" to protect the melanoma from T-cells.  

        Antibodies to PD1 bind to the PD1 on T-cells and prevent PD1 binding to PD-L1. This protects the T-cells from such shut-downs. Antibodies to PD-L1 bind to PD-L1 bearing melanoma cells and prevents PD1 from binding to PD-L1. This also protects the T-cells from shutting down. That's about all I know. 

        • February 23, 2014 at 12:44 am
        Maureen038
        Participant

        Thanks Pat and Jim for helping me. Pat, I will look for the webinar on MIF. I'm going to try my best to take a deep breath and try to relax  until I find out more information. Thanks for the support!

        Maureen

        • February 23, 2014 at 12:44 am
        Maureen038
        Participant

        Thanks Pat and Jim for helping me. Pat, I will look for the webinar on MIF. I'm going to try my best to take a deep breath and try to relax  until I find out more information. Thanks for the support!

        Maureen

        • February 23, 2014 at 12:44 am
        Maureen038
        Participant

        Thanks Pat and Jim for helping me. Pat, I will look for the webinar on MIF. I'm going to try my best to take a deep breath and try to relax  until I find out more information. Thanks for the support!

        Maureen

      • February 21, 2014 at 9:45 pm
      POW
      Participant

      We're beginning to hear more and more good things about antibody-drug conjugates (ADCs) which are now in clinical trials. For a nice, simple overview check out: http://www.gene.com/stories/understanding-antibody-drug-conjugates

      If he is BRAF negative and has severe reactions to checkpoint therapies, you might check out ADC. Sarah Cannon in Nashville is one location for them.  

      • February 21, 2014 at 9:45 pm
      POW
      Participant

      We're beginning to hear more and more good things about antibody-drug conjugates (ADCs) which are now in clinical trials. For a nice, simple overview check out: http://www.gene.com/stories/understanding-antibody-drug-conjugates

      If he is BRAF negative and has severe reactions to checkpoint therapies, you might check out ADC. Sarah Cannon in Nashville is one location for them.  

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