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

alice124's picture
alice124
Posts: 860
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.)

KJones1969
Posts: 158
Joined: Mar 2012

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. :)

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

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!

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

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's picture
foxhd
Posts: 1901
Joined: Oct 2011

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
Posts: 55
Joined: Jun 2011

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....

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

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

 

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

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.

jam66
Posts: 55
Joined: Jun 2011

Hey Tex,

I'm on my second month of Votrient. The side effects are SO much easier than Sutent. I'm doing well, but the IL-2 treatment was brutal, and set me back quite a bit. I feel like I'm just getting back into the swing of things. And, yes, my kids have definitely helped with that. Can't help but stay on top of things with three kids. :)

We switched our insurance to a ppo so ill be looking into clinical trials soon. I'm waiting until my next scan to get going on that. So, fingers crossed that Votrient does the job. My doctor mentioned glass bead therapy for my liver met that they do at Stanford. But I need to find out everything that's available and go from there. There seem to be so many options now!  Which is great...

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

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's picture
alice124
Posts: 860
Joined: Mar 2012

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.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Alice,

I have my PET scan tomorrow (Tuesday) and I meet with the thoracic surgeon on Thursday. I was supposed to have the scan last week but canceled due to the snow that moved through here. 2.5 hours each way in heavy snow in the south is not a good thing. So, no new news here. I sure hope to have a plan by the end of the week. Thanks for asking.

Congratulations on your retirement! Enjoy!

--David

tacyarts
Posts: 73
Joined: Apr 2012

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

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

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's picture
foxhd
Posts: 1901
Joined: Oct 2011

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)

tacyarts
Posts: 73
Joined: Apr 2012

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!!

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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

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

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's picture
alice124
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Joined: Mar 2012

LOAO!!!

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

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

 

Lawyer And The Virgin

A lawyer married a woman who had previously divorced ten husbands.

On their wedding night, she told her new husband, "Please be gentle, I'm still a virgin."

"What?" said the puzzled groom, "How can that be if you've been married ten times?"

"Well, Husband #1 was a sales representative, he kept telling me how great it was going to be.

Husband #2 was in software services, he was never really sure how it was supposed to function, but he said he'd look into it and get back
to me.

Husband #3 was from field services, he said everything checked out diagnostically but he just couldn't get the system up.

Husband #4 was in telemarketing, even though he knew he had the order, he didn't know when he would be able to deliver.

Husband #5 was an engineer, he understood the basic process but wanted three years to research, implement, and design a new state-of-
the-art method.

Husband #6 was from finance and administration, he thought he knew how, but he wasn't sure whether it was his job or not.

Husband #7 was in marketing, although he had a nice product, he was never sure how to position it.

Husband #8 was a psychologist, all he ever did was talk about it.

Husband #9 was a gynecologist, all he did was look at it.

Husband #10 was a stamp collector, all he ever did was... God! I miss him! But now that I've married you, I'm really excited!"

"Good," said the new husband, "but, why?"

"You're a lawyer. This time I know I'm gonna get screwed!"

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

Well, I suppose I did invite it!  Reminds me of the succinct news headline about deranged assaults on lady cleaners - specially formulated in words engineers can understand:  "Nut screws washers and bolts." 

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

 

 

  cid:1.1982185273@web161701.mail.bf1.yahoo.com

Five surgeons from big cities are discussing who makes the Best

patients to operate on.

The first surgeon, from New York, says, 'I like to see accountants

on my operating table because when you open them up, everything

inside is numbered.'

The second, from Chicago, responds, 'Yeah, but you should try

electricians! Everything inside them is color coded.'

The third surgeon, from Dallas, says, 'No, I really think librarians

are the best, everything inside them is in alphabetical order.'

The fourth surgeon, from Los Angeles chimes in: 'You know, I like

construction workers...Those guys always understand when you have

a few parts left over.'

But the fifth surgeon, from Washington , DC shut them all up when

he observed: 'You're all wrong. Politicians are the easiest to operate on.
There's no guts, no heart, no balls, no brains, and no spine..

Plus, the head and the ass are interchangeable.'

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

dup

 

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

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!!!

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

"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

 

 

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

ummmm.........go Ravens?.......Pats got smushed. Enjoy your glory.......me and my big mouth...Well at least we have UCONN basketball.

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

Sorry, gotta root for the Niners...the Harbaugh/Michigan connection and all...should be a fun game.

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

Doesn't that Michigan connection extend to all the Harbaugh's - Jim, John and Father Harbaugh? 

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

But Jim played at U of M Where my daughter went to school.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Lookin good John and Alice

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

I very happy your news continues to be good and I understand what its like to be a bit blue about it.

Thought this might help;

 

 

Don't take life so seriously! 
DANCE 


KISS A LOT ! 


RELAX IN NATURE 

HAVE FUN 

AND BE HAPPY!!!!

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

I think you must have moved from Michigan to the State of Euphoria!  Anyway, I want whatever it is you're having.

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

 

 

And the Infinite Sadness?
alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Gary - know this will shock you but I loved the "Melon Collie". Of course, it's the only pic that came through. Wink

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

The others were so darn cute!!

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

Could you try again?  I wasn't able to see any of them - you might want to get some technical help from Alice who seems to have led the way into using the new facilities. 

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

Let me know if this works

DANCE 

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

NOPE !

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

Mine was a simple cut and paste job. But I noticed it didn't last  too long. I'll play with it though.

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

Simple cut and paste, but I can't figure out why everything is there on my screen and not yours.

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

And the Infinite Sadness?

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

And the Infinite Sadness?

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

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

Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?

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

DANCE

 

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

Didn't even show up on mine

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

"I'll bite...

Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?"

You bit Gary, so :  I never post to that  SUGGESTION  BOX (for fear my ideas might be thought wet) I just swan off to talk to the greenkeepers - and, to answer the second part of your question, the Box is on the Buddon Course at Carnoustie and they reckon they don't need a reply button on the Box!  Cool

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Hi Alice.  You know I rarely post unless somebody asks for me to try and make sense of something for them.  I read here every day, but for some reason missed your thread.  In back channeling with David (DMIKE) he led me to this thread.  Again I'm sorry.

 

First of all,  3 and 4mm liver nodules are routinely skipped over by technologists not looking, but should be measured by the Radiologist.  Why there was no mention of it on the previous scan I can only guess.  The radiologist doing this reading evidently compared this scan to the previous images and not just to the previous report.   The fact that he was discussing the arterial phase of the exam leaves no doubt in his findings as even without waiting, the enhanced images are somewhat delayed......and that is where you get your best abdominal imaging.   The fact that it's now half the size, well then there's the good news.  Sometimes liver cysts and liver Mets and areas of fatty liver are tough to decide on, but here even though small, it's nice that they caught it.  No excuse for the Radiologist that missed it months before.

Wishing you and John all the best

Jeff

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

Jeff,

Thanks so much for your read.   You have nothing to be sorry about. We’re grateful to have someone as knowledgeable as you around to  help us understand all this gray matter.

 In retrospect,  I think we gave our technologists/radiologists a bad rap in my initial post.  The misread--I think-- stemmed from the call from his research nurse referring to” liver tumor.” In looking back I think it was her mistaken reference, not a mistake on those reading the scan. 

 Here’s the references on John’s  previous scans:

8/1/12 – Bottom of CT supplemental read  report : NOTE:  Liver lesion in segment 6 described in clinical dictation was present on 5/2/12 and may be a hemangioma.

10/24/12 CT Report– There is a 1 cm hemangioma  in segment 4A/4B of the liver.

When these references were made on the above reports, no alarm bells went off for me and John as we remembered your earlier posts referring to  hemangiomas as “a good thing “ in the scheme of things. So our minds were more or less at ease that we weren’t talking about liver metastasis. From Dr. Hammers lack of concern, he apparently still believes it is a hemangioma. Does this ring true with you?

 MORE good news! John received the RECIST report this week.  It was accompanied by a note from his research nurse, “RECIST read attached - looks good. 51% decrease from baseline, which I believe is your best read yet!” 

AND it is his best read yet. 51%  YES YES YES!!!! While we were not upset with the stability noted earlier, we’re clicking our heels on the 51%.  Thank you ALL for for your optimism, prayers and for being here.

Here's to more tumor reduction!!!

 

P.S.  A big thank  you to David too for flagging Jeff for me.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

So happy to read "good news".  And for sure having a 1cm anything read as a hemangioma is a good thing as well.  I'm getting ready for my follow ups now.  A week from this Tuesday I'm with the hematologist to try and figure out how to image me for my 1 year RCC follow up considering my last creatinine was 1.7.  I changed diet and water intake during that last 2 months since that blood test, to see if I might bring it down to an injectable 1.4.  We'll see.  Four weeks after that I have my 1 year follow up cystoscopy in the Uro/Onc office to check that nothing has come back in the bladder.  That 3cm carcinoma was only attached by a little stalk so they're feeling if I cysto once a year I should be fine.  Thank god that was low grade.  You think we have problems, you should read the bladder cancer threads.  Better yet…..Don’t.  I never post there, but I read.  We'll see.....back in the hands of those curious little beings called doctors...................

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