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

alice124
alice124 Member Posts: 896 Member

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.)

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Comments

  • KJones1969
    KJones1969 Member Posts: 158
    Good News

    Alice I am so happy you got some good news with his scans. John should not feel guilty about getting good results, that gives all of us hope when we read about good news. I'm praying the Votrient continues to maintain the cancer. :)

  • DMike
    DMike Member Posts: 259
    Update

    Hi Alice,

    I'm vey happy for John and you. Great news on the stability. Hopefully Jeff will reply and provide some answers to your questions.

    Good news is always welcome!

    --David

  • foxhd
    foxhd Member Posts: 3,181 Member
    DMike said:

    Update

    Hi Alice,

    I'm vey happy for John and you. Great news on the stability. Hopefully Jeff will reply and provide some answers to your questions.

    Good news is always welcome!

    --David

    Yea, 1 putt!

    I am smiling! Keep up the recovery. I may get more scans than most here. I know each time someone different reads the scans, my results vary. One time there is a tumor, next time there isn't. Broken rib on my left becomes a broken rib on my right. One time the radiologist reported on my stent in my cardiac widow maker. After I  asked for a clarification, he claimed the transcriptionist made an error. Yeah, right. HEY! NO DRINKING ON THE JOB!!!!!!!! Sheesh, we take this stuff seriously.

    Alice, you wonderful, beautiful, and damn smart woman, John is a lucky man. I hope he appreciates you. If not, I can send some criminally insane bikers his way for a talk. Even if they don't know many words. By the way keep your helmet handy..... Some time back you mentioned to me that I had been conspicuously absent. So, where have you been? I guess we all need some down time once in a while. FLY.

  • jam66
    jam66 Member Posts: 55
    foxhd said:

    Yea, 1 putt!

    I am smiling! Keep up the recovery. I may get more scans than most here. I know each time someone different reads the scans, my results vary. One time there is a tumor, next time there isn't. Broken rib on my left becomes a broken rib on my right. One time the radiologist reported on my stent in my cardiac widow maker. After I  asked for a clarification, he claimed the transcriptionist made an error. Yeah, right. HEY! NO DRINKING ON THE JOB!!!!!!!! Sheesh, we take this stuff seriously.

    Alice, you wonderful, beautiful, and damn smart woman, John is a lucky man. I hope he appreciates you. If not, I can send some criminally insane bikers his way for a talk. Even if they don't know many words. By the way keep your helmet handy..... Some time back you mentioned to me that I had been conspicuously absent. So, where have you been? I guess we all need some down time once in a while. FLY.

    Good news!

    Smile

    Fox, you make me laugh!  

     

    Alice, that's great news about your husband. Great hope for  those of us on Votrient.  So happy for you....

  • tacyarts
    tacyarts Member Posts: 73
    Happy news!!!

    What great news, stability for the next 20 years would sure be acceptable. I am so very happy for the two of you.

  • alice124
    alice124 Member Posts: 896 Member
    foxhd said:

    Yea, 1 putt!

    I am smiling! Keep up the recovery. I may get more scans than most here. I know each time someone different reads the scans, my results vary. One time there is a tumor, next time there isn't. Broken rib on my left becomes a broken rib on my right. One time the radiologist reported on my stent in my cardiac widow maker. After I  asked for a clarification, he claimed the transcriptionist made an error. Yeah, right. HEY! NO DRINKING ON THE JOB!!!!!!!! Sheesh, we take this stuff seriously.

    Alice, you wonderful, beautiful, and damn smart woman, John is a lucky man. I hope he appreciates you. If not, I can send some criminally insane bikers his way for a talk. Even if they don't know many words. By the way keep your helmet handy..... Some time back you mentioned to me that I had been conspicuously absent. So, where have you been? I guess we all need some down time once in a while. FLY.

    You are always great for the

    You are always great for the soul Fox. Thank you. And you're right about those radiologists. I remember Dena Battle (Chris Battle's wife) talking about Chris's scan referencing his  uterus. Really??????

    You're right I have been more scarce than usual but I'm getting ready to retire after 43 years in the banking world. And tying up loose ends has occupied much of the past couple weeks. But after January 31, I'm retired!!!! WOO HOO. I don't know what it will be like NOT to go to work, but promise to  make everyone (John included) sick of having me around!  And enjoy every minute of it!!!! 

    As always, John and I love having you on our sidelines!!!!

     

     

     

     

  • alice124
    alice124 Member Posts: 896 Member

    Good News

    Alice I am so happy you got some good news with his scans. John should not feel guilty about getting good results, that gives all of us hope when we read about good news. I'm praying the Votrient continues to maintain the cancer. :)

    good news

    Thanks K. Appreciate your keeping us in your prayers as we do you and your hubby. Let's keep our fingers crossed 2013 is a good year for us all!

  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    Happy news!!!

    What great news, stability for the next 20 years would sure be acceptable. I am so very happy for the two of you.

    Happy News

    Great to hear from you; thank you. 

    We've been wondering how your recovery is going and if you've returned to trial????? We're all stronger together!

     

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    alice124 said:

    Happy News

    Great to hear from you; thank you. 

    We've been wondering how your recovery is going and if you've returned to trial????? We're all stronger together!

     

     

    Alice's retirement

    Wow! that is exciting! That's great news! I hope you have nothing but good moments.

    By the way, GO PATS!..........(you can't have all good moments)

  • alice124
    alice124 Member Posts: 896 Member
    DMike said:

    Update

    Hi Alice,

    I'm vey happy for John and you. Great news on the stability. Hopefully Jeff will reply and provide some answers to your questions.

    Good news is always welcome!

    --David

    good news

    Hey David,

    Thanks for the cheering.

    I'm behind in my reading on Board and don't know how you are planning to treat lung nodules. Has that been determined? I tried searching for it but was unsuccessful.

  • alice124
    alice124 Member Posts: 896 Member
    jam66 said:

    Good news!

    Smile

    Fox, you make me laugh!  

     

    Alice, that's great news about your husband. Great hope for  those of us on Votrient.  So happy for you....

    Thanks Jam.  We are happy and

    Thanks Jam.  We are happy and know how fortunate we are. Hope it's a Win for you too. Go Votrient.

     

  • tacyarts
    tacyarts Member Posts: 73
    foxhd said:

    Alice's retirement

    Wow! that is exciting! That's great news! I hope you have nothing but good moments.

    By the way, GO PATS!..........(you can't have all good moments)

    I have continued the mdx portion of trial and will continue sutent next Thursday. My next scans are the 31st, boy lots of scan anxiety. I get my brace off next Thursday and then should be able to start putting a little weight on my leg. Thus far not much pain but I'm sure that I will hate my physiCal  therapist since I've been on my back for over 3 months now but I'm ready!!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jam66 said:

    Good news!

    Smile

    Fox, you make me laugh!  

     

    Alice, that's great news about your husband. Great hope for  those of us on Votrient.  So happy for you....

    Catch up

    Jennifer, how long have you been on Votrient?  It's been almost two years now since your original op.  so your Family will be happy to see you up and at it.  I reckon the IL2 will have set you up to benefit well from Votrient, particularly since I seem to remember you did fine on Sutent and the side-effects on Votrient are much gentler than on Sutent - are you finding it so? Are your kids all taking your situation in their stride. I'm guessing they are and are helping to keep you buoyed up.

  • foxhd
    foxhd Member Posts: 3,181 Member
    tacyarts said:

    I have continued the mdx portion of trial and will continue sutent next Thursday. My next scans are the 31st, boy lots of scan anxiety. I get my brace off next Thursday and then should be able to start putting a little weight on my leg. Thus far not much pain but I'm sure that I will hate my physiCal  therapist since I've been on my back for over 3 months now but I'm ready!!

    therapist

    Good luck with the scans. I understand being anxious. We poor therapists. We meet people and get paid to hurt them. No wonder we aren't the patients favorite people. Here's hoping you have a good one. Knowing how much to do is tough. You never want to do too much and set yourself back. A good therapist will know the proper rate of progress for you.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    therapist

    Good luck with the scans. I understand being anxious. We poor therapists. We meet people and get paid to hurt them. No wonder we aren't the patients favorite people. Here's hoping you have a good one. Knowing how much to do is tough. You never want to do too much and set yourself back. A good therapist will know the proper rate of progress for you.

    PT

    I was going to tell David he'd be OK if his PT is foxy - next best thing - getting some Foxy counsel.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    PT

    I was going to tell David he'd be OK if his PT is foxy - next best thing - getting some Foxy counsel.

    Presumed innocent

    Alice, do persuade John to plead not guilty.   I tend to share his feelings.

    However,  we shouldn't feel guilty - the reason we're both feeling so good is that it's the reward for virtue, seeing as we're lawyers - I'm confident Gary will confirm the accuracy of this conclusion.

  • alice124
    alice124 Member Posts: 896 Member
    foxhd said:

    Alice's retirement

    Wow! that is exciting! That's great news! I hope you have nothing but good moments.

    By the way, GO PATS!..........(you can't have all good moments)

    "By the way, GO

    "By the way, GO PATS!"

    hmmmmmmmmmmmmmm  - where did they go?

    ".........you can't have all good moments" - but this one is mine FOX!

    Rooted for the Ravens - not against you Fox. For the record, still adore Tom Brady!

    ELF

     

     

  • alice124
    alice124 Member Posts: 896 Member

    Presumed innocent

    Alice, do persuade John to plead not guilty.   I tend to share his feelings.

    However,  we shouldn't feel guilty - the reason we're both feeling so good is that it's the reward for virtue, seeing as we're lawyers - I'm confident Gary will confirm the accuracy of this conclusion.

    Presumed Innocent

    LOAO!!!

    Virtue and lawyer in the same sentence. Can't wait for Gary to check in. . .

  • alice124
    alice124 Member Posts: 896 Member

    Presumed innocent

    Alice, do persuade John to plead not guilty.   I tend to share his feelings.

    However,  we shouldn't feel guilty - the reason we're both feeling so good is that it's the reward for virtue, seeing as we're lawyers - I'm confident Gary will confirm the accuracy of this conclusion.

    dup

    dup

     

  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    I have continued the mdx portion of trial and will continue sutent next Thursday. My next scans are the 31st, boy lots of scan anxiety. I get my brace off next Thursday and then should be able to start putting a little weight on my leg. Thus far not much pain but I'm sure that I will hate my physiCal  therapist since I've been on my back for over 3 months now but I'm ready!!

    Right attitude

    Know the last several months have been hard but am keeping fingers and toes crossed that you've turned the corner. Know physical therapy will be tough but you're tougher. Great attitude!!! 

    Keep us posted!!!