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Update on John's (one putt) Nivolumab / Votrient Trial

alice124's picture
Posts: 897
Joined: Mar 2012

John had his 36 week scan on Wednesday, January 16.  Scan basically showed stability since last scan. But the report came with an initial gasp as his nurse noted what she considered good news: “John’s liver tumor had decreased in size.”  That wasn’t particularly well received as John didn’t know  he had a liver tumor. After John questioned this,  Dr. Hammers confirmed his belief there is no liver tumor and that the radiologist’s comment on the report was not a cause for worry.

 Overall, John and I are extremely happy that he continues positive results from the Nivolumab/Votrient trial.  John hasn’t posted these results as I believe he’s experiencing a little guilt.  Keeps asking why he continues to get positive results when so many aren’t as fortunate.?.?

MEDSCAN MAN – hope you are around to comment and make sense of the liver question.  This is what is noted: “Abdomen: In the arterial phase inferiorly in hepatic  segment 6/7 a 4.7 mm enhancing lesion has been decreased since prior studies measuring 8.8 mm on the study of 8/1/2012.”



John’s History at Johns Hopkins:

10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.

Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)

Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)

5/10/2012 – Began Nivolumab/Votrient trial BMS 936558 (also began Xgeva);
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.)

10/24/2012-CT scan showed 47% reduction (1% add’l.)

Limelife50's picture
Posts: 460
Joined: Nov 2011

I too had a low grade TCC tumor of the bladder,it was also low grade and measured about 1cm.It has been over a year doing Cystos and still all clear so now it has been decided to check twice a year for one more year.By the way i think i would prefer having a root canal verses one of those damm Cystoscopes

MedScanMan's picture
Posts: 108
Joined: Jul 2012

Actually, the cysto didn't bother me when I was three months post op.  The doctor doing it is the same Dr. that did my partial nephrectomy and truly saved my life by deciding to check the bladder while I was under anesthesia.  He was floored when he found a 3cm tumor considering there was no gross blood in the urine.  Mostly microscopic hematuria.  Believe me; I know how lucky I am.  If you go back to my very first post, I called it "Other side of the coin".........you'll see what luck is all about.  We all get nervous though when it’s time for the yearly check.



alice124's picture
Posts: 897
Joined: Mar 2012

Good luck with follow-up and preparation for follow-up. Hopefully all the good karma you've built on this Board willl accompany you as we recycle it back to you. 

Texas_wedge's picture
Posts: 2803
Joined: Nov 2011


vtvickil's picture
Posts: 18
Joined: Jul 2012

With all the drama in our little world I completely missed this.  SOOOOO happy to hear the positive news!  Keep it coming - you are giving us all much to hope for!


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