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

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

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

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

Paula, you know how happy I am for you. Have a safe trip. Make us proud. Fox loves you.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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
Posts: 73
Joined: Apr 2012

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
Posts: 67
Joined: Oct 2011

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

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
Limelife50
Posts: 409
Joined: Nov 2011

Hope you get the best possible response

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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

MuayThaiSister
Posts: 5
Joined: Sep 2012

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
Posts: 218
Joined: Jul 2012

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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

I am alive
Posts: 218
Joined: Jul 2012

OMG. IN that photo you look like you're 34 yrs. old!

angec's picture
angec
Posts: 621
Joined: Mar 2012

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's picture
foxhd
Posts: 1874
Joined: Oct 2011

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
garym
Posts: 1651
Joined: Nov 2009

May they both grow very old together!!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

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

angec's picture
angec
Posts: 621
Joined: Mar 2012

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!

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

I would hold Paula's hand anywhere, anytime. Who wouldn't?

foxhd's picture
foxhd
Posts: 1874
Joined: Oct 2011

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.

BENLBENTLEY
Posts: 6
Joined: May 2012

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.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
foxhd
Posts: 1874
Joined: Oct 2011

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 72
Joined: Sep 2012

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
angec
Posts: 621
Joined: Mar 2012

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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's picture
angec
Posts: 621
Joined: Mar 2012

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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