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Nivolumab/Ipilimumab Trial vs. Sutent?

buwatcha
Posts: 2
Joined: Apr 2013

Hi all,

 

My mom was recently diagnosed with Kidney cancer.  They removed her kidney about two weeks ago.  The tumors have also spread to her lungs.  She is 72 years old and in pretty good health otherwise.

 

She is now weighing the choice between starting Sutent or entering a trial that combines Nivolumab and Ipilimumab. 

Is there an obvious choice with one route clearly being better than the other?

 

 

 

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

If she has an opportunity to go with an immunotherapy - by all means do it.  In the best case she could benefit with long term remission.  Sutent does not offer that possibility.

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

I'd take the trial.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

Need I say yes?

buwatcha
Posts: 2
Joined: Apr 2013

Thanks for the feedback.

 

Her first doctors are suggesting that Sutent is the better route, more proven, etc.  They said what if Nivolumab doesn't work and you waste three months?  Also, they implied that some of these trials are motivated by financial concerns more than patient need and that they wouldn't be missing out any kind of magic cure.  They stated the press is making it out to be better than it is at this point.

 

The second set of doctors are the ones she went to for a standard second opinion.  They weren't strongly pushing the Nivolumab, but when my parents asked about PD1, the doctors said "we have a trial available if you want in."  The nurses seemed to think it was a great opportunity.  But, again the doctors weren't pushing it on her either.

 

Both sets of doctors are from highly respected cancer centers.  I think my parents feel more comfortable with the first set - they like them better.  And they are worried that Nivolumamb is experimental.  

It's very tough choice that will have to be made this week.  Any more opinions or elaboration would be so wonderful!

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Even though I presently am on Sutent - and doing well with it - it is going to fail me at some point.  When it does I plan to seek out whatever immunotherapy I can get my hands on.  Yes, anti-PD1 is currently "experimental".  So what?  I've got news for your parents. Each and every cancer tumor is different, non-homogenous, constantly evolving and therefore totally "experimental".  I consider my body my personal in-home "Cancer Chemistry Set".  I didn't ask for this particular gift.  But now that I have it I keep trying to figure out how it works.  So, how well does anti-PD1 work "experimentally"?  Here is the first detailed report:

This was presented during Opening Plenary Session of the AACR (American Association for Cancer Researchers) Annual Meeting last week:

"Durable Cancer Regression Off-Treatment and Effective Reinduction Therapy with an Anti-PD-1 Antibody"

http://clincancerres.aacrjournals.org/content/19/2/462.abstract

You don't need to be fighting the last war (by using Sutent).  Place your bet on the future and on a therapy that just might give you long term remission.  And, if it doesn't, Sutent (and numerous other FDA approved drugs) are still there beckoning you.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

I always wonder what motivates Drs.  After all the recent press about nivolmab and it's effectiveness for many people, to downplay it seems like they have an obligation to other treatments. Or they are not kidney cancer specialists. We see this often. Sounds like they are less interested in saving lives.  Please read back in my posts. I went from 20 something tumors and short life expectancy to about 3 manageable bone mets. My quality of life is better than most disease free people. I am strong and fit.  Nivolumab is the most sought after trial in treating kidney cancer. To be told anything less is intentially misleading. I think it is safe to say that at least 90% of the people who have educated themselves re: kidney cancer treatments would opt for the opportunity to take nivolumab. At this point the cure is in clinical trials. Not in current approved drugs being used. I can also state that I am essentially side effect free. Have your Drs. beat that with anything else they suggest. Be cautious. Reexamine your goal.

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

Have you asked her doctors what happens if the Sutent doesn't work and she's lost 3 months? 

Have you asked them about Votrient and Inlyta, which are both likely to prove superior to Sutent in the near future?

Have you asked them on what basis they claim the journalists are hyping nivolumab excessively?

I'm presently on Votrient and doing well and I chose it over Sutent. However, I would have gone for either HD IL2 or nivolumab had I had access to either of these and probably a nivolumab trial would have been my first choice.  I think going for the trial is a no-brainer.

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

Go for the Nivolumab trial.  Immunotherapy that can offer a cure is most sought after. If you have the option take it! Many are seeking this offer and cannot get it for one reason or the other.  I would take that offer hands down.  Like the others have said, Sutent and other drugs are there is this one fails.  Besides, on the trial i think the scans are usually six weeks at first. Fox and John would know about that one.... 

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

If its the same as Chucks scans come at 6 weeks..which is right after the 3rd infusion..

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

If its the same as Chucks scans come at 6 weeks..which is right after the 3rd infusion..

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

My husband Chuck is currently on an Anti PD 1 + ipi trial..Nivolumab we chose thectrial over a drug as a second line treatment he already underwent HD IL2..we were willing to take the risk even though his cancer is fairly aggressive for a chance at a more sustained response..as our orig..urological oncologist told us...you can build up an immunity to the drugs deoending on your reaction to them..when you run out of drugs what then?..that was in our discussion of what we should do when given the option by Chucks oncologist for hd il2..it sticks in our mind..when we make our choices...and if this does not work our next choice would be vitriont I spelled that way wrong..there is more known about sutent because its been around longer but thats our choice for a 4th line if we need it because of the side affects...I guess what I am saying is everyone chooses their course thatcworks for them..I would also point out there is stepping on thevtoes aspect in some second opinions...as we told Chucks Doctors we are grateful we are someplace where we are given all our options with details..and not pushed by them in any one direction...most doctors have a favored course..our doctors want us to chose the best one for us...with informed decisions..they gave us a bit to look into all the options and decide...trials are fairly tough to get into..being offered one is pretty much a small miracle thats something to think about too..like I said encourage them to consider and go overcall their options they will know whats best for them..the biggest thing is your Mom knowing what will work and believing it can work..mind and attitude have a lot to do with treatment..sending lots of huggss and well wishes

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