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

pjune127
pjune127 Member Posts: 127
edited September 2012 in Kidney Cancer #1
I am very excited to tell everyone I am going to Nashville to see about a clinical trial with the wonder drug...BMS936558 (also know as Fox's MDX1106). Got the call yesterday to come to sign some release forms in Nashville at 8:45 on Friday morning. They got all my records and I will be talking to a doctor about all the trials available to me.

For a short review, I was diagnosed with CCRCC in May 2011, had my kidney removed at Duke in July, and went back home to Atlanta in August. I took Sutent for 10 months for mets in my lungs. Had a great response for about 9 months. When remaining tumors showed growth in June, I took Inlyta for two months. Got NO response; in fact two nodules that had almost disappeared have begun to grow again.

So instead of going with another drug that cannot cure me and can only work for a matter of time, I opted to donate my body to science BEFORE I die (which I don't plan to do anytime soon, I might add). I feel especially lucky to be going for the cure. Not sure of all the details yet. I will know more on Friday and will report back and let you all know how it goes. Fox has explained in his threads how this drug works. And he also has been a real friend to me when the going got tough. These boards are such a safe and wonderful place to meet kindred souls.

I intend to FLY as my good friend would say!

Much love and prayers to all.

Paula
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Comments

  • foxhd
    foxhd Member Posts: 3,181
    You go girl!
    Paula, you know how happy I am for you. Have a safe trip. Make us proud. Fox loves you.
  • alice124
    alice124 Member Posts: 896
    YES!!!
    Paula,

    I am thrilled you're getting into one of the MDX-1106/BMS936558 trials! And with Fox as a coach--it doesn't get better! Get that suitcase packed. Congratulations!!!! I'm really happy for you.
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    YES!!!
    Paula,

    I am thrilled you're getting into one of the MDX-1106/BMS936558 trials! And with Fox as a coach--it doesn't get better! Get that suitcase packed. Congratulations!!!! I'm really happy for you.

    Yeah
    I'm happy for you to get the chance to try a very promising drug. I am also on a trial sutent / mdx 1106. I get my first scans in a week and a half, be ready for some positive results from me!!
  • NanaLou
    NanaLou Member Posts: 71
    tacyarts said:

    Yeah
    I'm happy for you to get the chance to try a very promising drug. I am also on a trial sutent / mdx 1106. I get my first scans in a week and a half, be ready for some positive results from me!!

    Wonderful news
    This is great to hear. I will be in that hospital getting my Interleukin!! Best wishes and many prayers coming your way!!!
  • pjune127
    pjune127 Member Posts: 127
    NanaLou said:

    Wonderful news
    This is great to hear. I will be in that hospital getting my Interleukin!! Best wishes and many prayers coming your way!!!

    I would love to meet you but..
    I am going to Sarah Cannon Research Institute, across the street from Vanderbilt. Besides, I'm guessing you won't be up to meeting online friends right about then! :) Maybe on another visit we can connect. I wish you only the best!!! XO
  • pjune127
    pjune127 Member Posts: 127
    tacyarts said:

    Yeah
    I'm happy for you to get the chance to try a very promising drug. I am also on a trial sutent / mdx 1106. I get my first scans in a week and a half, be ready for some positive results from me!!

    Tacyarts...
    I'm expecting great things for you. Sutent walloped my cancer for 10 months! That along with the mdx1106 will move you to the head of the class!
  • Limelife50
    Limelife50 Member Posts: 476
    pjune127 said:

    Tacyarts...
    I'm expecting great things for you. Sutent walloped my cancer for 10 months! That along with the mdx1106 will move you to the head of the class!

    Good luck
    Hope you get the best possible response
  • garym
    garym Member Posts: 1,647
    Get ready to kick some cancer butt!!
    Paula,

    I am excited for you and I know you will be giving cancer the old heave ho very soon!! Keep that big smile and positive attitude going they are powerful weapons in this battle.

    I hafta ask; Who's this science guy that you donated your body to and does he have a sister that would take mine?

    You are in my thoughts and prayers.

    Godspeed,

    Gary
  • pjune127
    pjune127 Member Posts: 127
    garym said:

    Get ready to kick some cancer butt!!
    Paula,

    I am excited for you and I know you will be giving cancer the old heave ho very soon!! Keep that big smile and positive attitude going they are powerful weapons in this battle.

    I hafta ask; Who's this science guy that you donated your body to and does he have a sister that would take mine?

    You are in my thoughts and prayers.

    Godspeed,

    Gary

    The science guy
    is really Sarah Cannon Research Institute in Nashville, Tennessee. It is a research institute designed only for clinical trials, so the work is fast, efficient, and clean. I had never heard of it, but people in the "business" say it is a gem of a place.

    I'll bet they would take your body if you asked nicely and passed all the entrance exams. Would love to have a buddy there with me!

    Love, Paula
  • AWESOME NEWS!
    Paula, What great news to wake up to this morning!
    We'll be sending positive vibes from up here in Ottawa. Go kick it to the curb!
    Kim
  • I am alive
    I am alive Member Posts: 315
    Yahoo!!!
    I'm THRILLED for you, Paula! Atta girl! Go get 'em! We'll all be here rooting for you and waiting to hear how it goes. (is that your son in your photo?
    He's ADORABLE.) Sending hugs & good thoughts.
  • pjune127
    pjune127 Member Posts: 127

    Yahoo!!!
    I'm THRILLED for you, Paula! Atta girl! Go get 'em! We'll all be here rooting for you and waiting to hear how it goes. (is that your son in your photo?
    He's ADORABLE.) Sending hugs & good thoughts.

    Omigosh...you made my day
    That is my grandson! My son is 36 years old. That was a HUGE compliment! I love you!
  • I am alive
    I am alive Member Posts: 315
    pjune127 said:

    Omigosh...you made my day
    That is my grandson! My son is 36 years old. That was a HUGE compliment! I love you!

    OMG. IN that photo you look
    OMG. IN that photo you look like you're 34 yrs. old!
  • angec
    angec Member Posts: 924
    pjune127 said:

    Omigosh...you made my day
    That is my grandson! My son is 36 years old. That was a HUGE compliment! I love you!

    WOW!
    Paula, glad to hear you are going for the MDX. I hope soon it is standard treatment as it seems to do well, and very importantly, the side affects are tolerable! You serious that is your grandson? I have to agree, you look VERY young! Good for you, that means you have the strength to pull this off! Go get em! xxoo
  • foxhd
    foxhd Member Posts: 3,181
    angec said:

    WOW!
    Paula, glad to hear you are going for the MDX. I hope soon it is standard treatment as it seems to do well, and very importantly, the side affects are tolerable! You serious that is your grandson? I have to agree, you look VERY young! Good for you, that means you have the strength to pull this off! Go get em! xxoo

    WOW
    See. Don't always need jokes to make people smile and feel good. Pretty face, great attitude, and loving family. Thats our Paula!
    Reminds me of a music video a few years back. Rachael Hunter pays some teenagers mom. His friends are awestruck with her as she struts around the swimming pool in her bikini. She couldn't POSSIBLY be THAT old!


    I'm smiling. Bet you are too!
  • pjune127
    pjune127 Member Posts: 127
    foxhd said:

    WOW
    See. Don't always need jokes to make people smile and feel good. Pretty face, great attitude, and loving family. Thats our Paula!
    Reminds me of a music video a few years back. Rachael Hunter pays some teenagers mom. His friends are awestruck with her as she struts around the swimming pool in her bikini. She couldn't POSSIBLY be THAT old!


    I'm smiling. Bet you are too!

    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
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    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

    Smiling!
    It's a crafty dodge to pretend that that picture of your young Daughter-in-Law is really you but nobody's buying it Paula :)

    Looking forward to sunshine from Tennessee and to you joining Fox on the rostrum (but he might not welcome it because you're gonna make him look so very, very old!!)
  • garym
    garym Member Posts: 1,647

    Smiling!
    It's a crafty dodge to pretend that that picture of your young Daughter-in-Law is really you but nobody's buying it Paula :)

    Looking forward to sunshine from Tennessee and to you joining Fox on the rostrum (but he might not welcome it because you're gonna make him look so very, very old!!)

    Paula and the fox...
    May they both grow very old together!!!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Paula and the fox...
    May they both grow very old together!!!

    Paula and Foxy
    Fox could be forgiven for being tempted by that idea but I bet his Wife would have something to say about it!
  • garym
    garym Member Posts: 1,647

    Paula and Foxy
    Fox could be forgiven for being tempted by that idea but I bet his Wife would have something to say about it!

    Tex, Tex, Tex...
    You really are a dirty (not so old) man...LOL
  • foxhd
    foxhd Member Posts: 3,181
    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
    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
    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
    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
    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

    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
    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

    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
    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
    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