Clinical trial BMS936558 (MPDL3280A)(MDX1106)--you know, the anti-PDL1 drug!

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Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #22
    garym said:

    Tex, Tex, Tex...
    You really are a dirty (not so old) man...LOL

    Duh
    Trying to figure out what to say............I'll come up with something.........pretty soon.........just watch.........
  • angec
    angec Member Posts: 924 Member
    #23
    foxhd said:

    Duh
    Trying to figure out what to say............I'll come up with something.........pretty soon.........just watch.........

    Holding Hands!
    I think it is safe to say the spouses of both Fox and Paula, wouldn't mind if they skipped into NED together, holding hands!! :) I for one would cheer them on at the other end!
  • BENLBENTLEY
    BENLBENTLEY Member Posts: 7
    #24
    MDX 1106 Trial
    Hi Paula I am also on the 1106 trial at Vandy and it has really been a blessing for me. This June made 5 years I have been fighting Stage 4 CCRCC. By chance is your doctor's name Sosman. I have been under his care since my diagnosis in 07 and he is a wonderful doctor. This is my third trial and I really believe it is the way to fight cancer.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #25
    pjune127 said:

    Yes I am smiling!
    I am proud of my 61 years! And seriously want at least 20 or 30 more. I want to watch that little guy grow up and I want to be at his sister's wedding. (They are 4 and 6.) Funny though, sometimes I am with my son and people think we are brother and sister. While that makes me feel great, Scott is not quite sure how to handle it. I just smile.

    Love to you all. Off to Tennessee this afternoon for tomorrow's early appointment. You guys will be the first to know! XXOO

    kinda the same
    My son is 35. 5'10". I'm 6' He weighs 260 with a huge gut. I'm 190# and 34+/- waist. He is bald. I cut my hair short, but I have some. When we go places together, I introduce him as MY father! Pisses him off.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #26
    angec said:

    Holding Hands!
    I think it is safe to say the spouses of both Fox and Paula, wouldn't mind if they skipped into NED together, holding hands!! :) I for one would cheer them on at the other end!

    holding hands
    I would hold Paula's hand anywhere, anytime. Who wouldn't?
  • pjune127
    pjune127 Member Posts: 127
    #27
    BENLBENTLEY said:

    MDX 1106 Trial
    Hi Paula I am also on the 1106 trial at Vandy and it has really been a blessing for me. This June made 5 years I have been fighting Stage 4 CCRCC. By chance is your doctor's name Sosman. I have been under his care since my diagnosis in 07 and he is a wonderful doctor. This is my third trial and I really believe it is the way to fight cancer.

    Hi Ben and all about Sarah Cannon
    First of all Ben, I am not at Vandy. I was at Sarah Cannon Research Institute in Nashville today. I am from Atlanta, so my oncologist is located where I live. Today I talked to Dr. Todd Bauer at SCRI who couldn't have been nicer, more positive, or more energetic!

    I went to this amazing facility and spoke with Dr. Bauer's PA first, then with Dr. Bauer, and then with a research nurse in drug development. Everyone was incredibly nice and my experience could not have been better. It seems before I can be on the PDL1 trial, a tumor sample must be tested by Genentech to determine if I have the receptor gene. Over 60% of patients do have this, and I am hoping I am one of them. It seems without this receptor, the PDL will fail.

    I am also being told about a CP-MGA271 trial (with teplizumab?) It is a monoclonal antibody and I'm not sure how I feel about it. It was originally tested for the treatment of childhood diabetes. So I'm praying and would welcome your prayers for the PDL receptors to be there! There is a PDL and Votrient trial that I would consider, but there are no openings in it right now.

    In all, this was a good day. I feel like I am on the way to making a big step. I am moving forward.

    I swear I felt all your strength today. It felt extra special and I thank you from the bottom of my heart.

    So I wait.....it will be about 2-4 weeks until the drug companies finish the testing. I'm hanging in there with all of you by my side.

    .....PS...guess who Sarah Cannon is......it's MINNIE PEARL! Howdee!!!!!!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #28
    pjune127 said:

    Hi Ben and all about Sarah Cannon
    First of all Ben, I am not at Vandy. I was at Sarah Cannon Research Institute in Nashville today. I am from Atlanta, so my oncologist is located where I live. Today I talked to Dr. Todd Bauer at SCRI who couldn't have been nicer, more positive, or more energetic!

    I went to this amazing facility and spoke with Dr. Bauer's PA first, then with Dr. Bauer, and then with a research nurse in drug development. Everyone was incredibly nice and my experience could not have been better. It seems before I can be on the PDL1 trial, a tumor sample must be tested by Genentech to determine if I have the receptor gene. Over 60% of patients do have this, and I am hoping I am one of them. It seems without this receptor, the PDL will fail.

    I am also being told about a CP-MGA271 trial (with teplizumab?) It is a monoclonal antibody and I'm not sure how I feel about it. It was originally tested for the treatment of childhood diabetes. So I'm praying and would welcome your prayers for the PDL receptors to be there! There is a PDL and Votrient trial that I would consider, but there are no openings in it right now.

    In all, this was a good day. I feel like I am on the way to making a big step. I am moving forward.

    I swear I felt all your strength today. It felt extra special and I thank you from the bottom of my heart.

    So I wait.....it will be about 2-4 weeks until the drug companies finish the testing. I'm hanging in there with all of you by my side.

    .....PS...guess who Sarah Cannon is......it's MINNIE PEARL! Howdee!!!!!!

    Trial qualification
    Fingers crossed that you get into it Paula. What a pleasing history the Institute has!

    As you say, you're on your way and something good will come of your initiative, it just remains to be seen exactly what form that takes.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #29
    Texas_wedge said:

    Trial qualification
    Fingers crossed that you get into it Paula. What a pleasing history the Institute has!

    As you say, you're on your way and something good will come of your initiative, it just remains to be seen exactly what form that takes.

    Great report
    Great report Paula. I'll tell you that my biopsies were real easy. I forget what it was called but they went down my throat and shot some tool out to a lymph node. Never felt a thing. Before or after. Maybe thats what they will do for you. I was going to goof a little and say that when you went to Nashville to say Hi to Minnie Pearl. How right I was! Pulling for you. Fly!
  • pjune127
    pjune127 Member Posts: 127
    #30
    foxhd said:

    Great report
    Great report Paula. I'll tell you that my biopsies were real easy. I forget what it was called but they went down my throat and shot some tool out to a lymph node. Never felt a thing. Before or after. Maybe thats what they will do for you. I was going to goof a little and say that when you went to Nashville to say Hi to Minnie Pearl. How right I was! Pulling for you. Fly!

    I Wanna Hold your Hand...
    Hi Fox! Duke University is sending samples of my original tumor to them, so no biopsies for me, I don't think. Kind of yucky to think that hospitals have so many tumors that they save for years. They are obviously preserved ...kept in "locked storage". Wouldn't you love to have a job at a hospital tending to those buggers! Good to be home for now. I hope to hear soon...Get this job started. Wouldn't it be cool if we were the cure??? XO
  • garym
    garym Member Posts: 1,647
    #31
    pjune127 said:

    I Wanna Hold your Hand...
    Hi Fox! Duke University is sending samples of my original tumor to them, so no biopsies for me, I don't think. Kind of yucky to think that hospitals have so many tumors that they save for years. They are obviously preserved ...kept in "locked storage". Wouldn't you love to have a job at a hospital tending to those buggers! Good to be home for now. I hope to hear soon...Get this job started. Wouldn't it be cool if we were the cure??? XO

    Tumor sitter...
    Paula,

    I hope who ever the tumor sitters are around the world that they will be out of a job in our life times, which btw, I expect yours will be many many more years. i pray your wait is short and the results are what you want them to be. Hang in there kiddo.

    Godspeed,

    Gary
  • pjune127
    pjune127 Member Posts: 127
    #32
    garym said:

    Tumor sitter...
    Paula,

    I hope who ever the tumor sitters are around the world that they will be out of a job in our life times, which btw, I expect yours will be many many more years. i pray your wait is short and the results are what you want them to be. Hang in there kiddo.

    Godspeed,

    Gary

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #33
    pjune127 said:

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula

    Waiting
    Paula, it should be a little easier knowing that you're about to get onto the best chance yet for big, maybe huge, improvements and also joining the ranks of the Titans!

    There's a burst of activity on at KIDNEY-ONC at present, scrutinising new treatments that show promise - it's all happening these days and buying more time never made better sense, with prospects getting better and better. Staying stable or even losing ground slowly is good enough to stay in the game while things are improving so much. Let your lovely family and the rest of us here keep you in high spirits, ready for the good things to come soon.
  • one putt
    one putt Member Posts: 72
    #34
    pjune127 said:

    Thanks, Gary!
    Waiting is the very hardest part in this kidney game! I figure I have been off meds for three weeks, since finding out the Inlyta didn't work. In order to participate in a trial, you must be off meds for one month. I went on Inlyta the beginning of July because the Sutent had quit working. So in all, I worry that I haven't been fighting this cancer effectively for nearly 4 months. I am READY to kick butt, but I think it will be at least another 2-3 weeks till I can start. Wait, wait, wait. There is no alternative. It is evil in my body, trying to gain ground every day. I do feel relatively well, but am working to keep my appetite up and not lose weight. I have begun sweating at night (again) and I know it's there. Gotta stay positive!!! Your thought and prayers make that easier. :)

    I'm going for the gusto gang! Glad to have you all along for the ride!

    Love, Paula

    night sweats
    Paula, after completing my last dose of HDIL2 I also went thru night sweats, loss of appetite and constant tumor fevers until I began my MDX/VOTRIENT trial.I know from experience how difficult it is to keep one's appetite up but at this point it's the most important thing you can do for yourself.You need to show your cancer that you are in charge.The 3 month wait with no treatment,before my trial began,seemed like an eternity to me.Here's hoping your wait won't last much longer,and you will join those of us in these trials who are having a positive response.
  • pjune127
    pjune127 Member Posts: 127
    #35
    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula
  • garym
    garym Member Posts: 1,647
    #36
    pjune127 said:

    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula

    With you all the way!!!
    Paula,

    It doesn't seem to matter what we are waiting for, the waiting game is always the worst. Our imaginations and emotions run wild, but you've been through it and you know the drill. Keep busy, find things to occupy your mind, the time will pass much faster and taking it one day at a time is a very good approach. You are in my thoughts and prayers.

    Hang in there,

    Gary
  • angec
    angec Member Posts: 924 Member
    #37
    pjune127 said:

    Thanks for all the encouragement!
    I wish I could have UPS track the progress of getting my tumor samples to the drug companies~At least I would know where I am in the system! LOL..I do know that Duke has sent them to SCRI. Now SCRI has to send them to the drug companies for testing. I'm figuring it will be another couple of weeks until I hear something. I really am feeling all right. At times it's more of a battle in my head than a battle in my body. One day at a time....

    You all are my life blood. Stay with me.

    Paula

    Mind plays tricks..
    Paula, hang in there. Even if some time goes by the MDX will make up for it. I can tell you the mind does play tricks on you. My mom,now 80, was doing great, feeling great, gaining weight and looked better than me. Until she found out she had two small lung mets. Then suddenly she started saying she couldn't breath and has breathing issues.. almost immediately after she found out. She stopped eating, started sleeping more etc. I attribute that to the mind because the doctor said that right now her mets are still so small that they would not cause her any problems at the moment. So being a female, just maybe the night sweats are hormones? (even though you claim you are 60 or so SMILE!) But try to keep busy and focus on positive thoughts. Picture the soldiers in your body lining up to take charge over the tumors and eliminating them. Stay positive and know that soon you will be heading for treatment! Prayers going out to you... xxoo
  • pjune127
    pjune127 Member Posts: 127
    #38
    angec said:

    Mind plays tricks..
    Paula, hang in there. Even if some time goes by the MDX will make up for it. I can tell you the mind does play tricks on you. My mom,now 80, was doing great, feeling great, gaining weight and looked better than me. Until she found out she had two small lung mets. Then suddenly she started saying she couldn't breath and has breathing issues.. almost immediately after she found out. She stopped eating, started sleeping more etc. I attribute that to the mind because the doctor said that right now her mets are still so small that they would not cause her any problems at the moment. So being a female, just maybe the night sweats are hormones? (even though you claim you are 60 or so SMILE!) But try to keep busy and focus on positive thoughts. Picture the soldiers in your body lining up to take charge over the tumors and eliminating them. Stay positive and know that soon you will be heading for treatment! Prayers going out to you... xxoo

    Kind words
    angec, thanks so much for the encouragement. It is an incredible boost to me right now. Waiting, waiting, waiting....Good things come to those who wait, right? Prayers are so appreciated. God bless y'all!

    XO Paula
  • angec
    angec Member Posts: 924 Member
    #39
    pjune127 said:

    Kind words
    angec, thanks so much for the encouragement. It is an incredible boost to me right now. Waiting, waiting, waiting....Good things come to those who wait, right? Prayers are so appreciated. God bless y'all!

    XO Paula

    Good things ....
    Good things are on the horizon I am sure!! The prayers continue for comfort and good, positive thoughts. You will be fine! I can't wait to read your posts after your treatment. Xxoo

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