Nivolumab/OPDIVO

I'd do it

in a minute.

rhominator said:

Thanks!

That's great. That's the kind of results I want too. Thanks for sharing your results and review.

Oral or injection?

I looked and it seems that is an IV shot given ever few weeks. IS their an oral version of it?

I'm doing it

Just had a scan on 12/11 that showed continued stable disease.  Amazingly it's been this way since april of 2012.  Along with the milliary cancer throughout my lungs, One pesky "Marker Nodule" in my left lung lower lobe is at 15mm x 9mm.  It's had statistically insignificant changes over the past year on half dose votrient.  So we have one measurable tumor against which we can measure progress.  I'm told that I should start feeling a whole bunch better when I switch, so...

I've stopped the votrient to get a 2 week flush out period, and then will begin infusions of Nivo on 12/29.  A Christmas Miracle.  I'm getting my Red Ryder BB Gun.  I also plan to regain alot of the muscle mass I've lost and, if the cough goes away I've promised to start running again.

Here we go!

APny said:

Fox, why did they change you

Fox, why did they change you from that to Votrient? If it was working so well and you had hardly any side effects why the switch to the other drug?

APny

It was due to the protocol of the study. One of my remaining mets grew an ever so slightly amount. One goal of a promising drug trial is to only produce success, not failure. So I am sure they weed out less than perfect results. Especially with such a potentially effective drug. However, the timing was on target for a shot of Il-2. I was such a good candidate, it was worth the try. I wasn't ned or cured but I remained stable for another year with no treatment. Votrient started when the tumors grew in the spinal duramatter.

So, now that we know that I am a good partial responder to alot of drugs, a new nivo cocktail may be just the ticket to keep me ticking awhile longer. But we will ride out the votrient until we are forced to change. I get votrient for free saving over $3k a month. It's tough to look the gift horse in the mouth despite the crappy side effects. I think candidates for the now approved nivo have to have been on anti-angiogenic meds prior to starting nivo. I don't know for how long though.

 

foxhd said:

APny

It was due to the protocol of the study. One of my remaining mets grew an ever so slightly amount. One goal of a promising drug trial is to only produce success, not failure. So I am sure they weed out less than perfect results. Especially with such a potentially effective drug. However, the timing was on target for a shot of Il-2. I was such a good candidate, it was worth the try. I wasn't ned or cured but I remained stable for another year with no treatment. Votrient started when the tumors grew in the spinal duramatter.

So, now that we know that I am a good partial responder to alot of drugs, a new nivo cocktail may be just the ticket to keep me ticking awhile longer. But we will ride out the votrient until we are forced to change. I get votrient for free saving over $3k a month. It's tough to look the gift horse in the mouth despite the crappy side effects. I think candidates for the now approved nivo have to have been on anti-angiogenic meds prior to starting nivo. I don't know for how long though.

 

Thanks, Fox. I didn't know

Thanks, Fox. I didn't know how these trials work. It just sounded so good for you it's too bad about that one met growing a little. If understand correctly, you can get back on it when it's time to switch from Votrient? With the good results and few side effects I certainly hope that's an option for you.

foxhd said:

me too

there is still the issue of who would pay for it. So I'll cross my fingers for now.

Medicare coverage

My understanding of our Medicare coverage is that drugs adminstered in a hospital/clinic (infusion) are covered under Medicare part B, not our drug plan Part D. That should make it much more affordable. I'm open to correction but I believe that's correct.

David

 

Here you go:

https://www.medicare.gov/coverage/prescription-drugs-outpatient.html

 

My doctor's recommendation

Rhom, my doctor recommend that I stay on Sutent until it stops working, then utilize other meds in the arsenal.   Her reasoning was that I am tolerating the Sutent well, so why stop if it is working.  This may not be your case with Votrient, but if it is, it is worth debating imo.  

What we did not discuss is whether I could come back to Sutent or Votrient if I went to Nivo.  I assume I could but I am not sure?  Good luck with any choice you make and keep us posted.

Darron said:

Nivo

i am a huge Nivo fan, been on it since Feb 2013 in combination with Sutent As part of a trial. I am one of 3 patients left on the drug of the 24 that started in the trial at Levine Cancer Institute. You were allowed two progressions and you were kicked out (Fox was in an earlier trial, one progression allowed), or if your side effects became too harsh, you were kicked out.. The Nivo side effects are minimal if you don't react, so it is a great drug. If you do encounter side effects, they can be quite serious, And must be watched closely by your doctor.

i would say this, if your current drug is working, let it keep working and talk about Nivo as your next weapon. Everyone responds different to different drugs. If you find one that keeps you stable and you tolerate it well, you are winning the fight. I had always hoped that Nivo was a magic bullet that would win the war. I guess time will tell, durability numbers are not fully developed, so the total picture is still unfolding. If it matches IL2's 8% durable response and has lower SE's and higher progression free survival....well that is pretty darn good, just too early to tell. I think everyone believed for a while that it was going to be almost a sure cure. I remember the excitement in the site about people trying to get on a trial. I am living proof it can work, but I also have friend from my trial that went progression free for a good while and had recurrences. 

My response continues, I am coming up on 18 months NED, still taking the meds, still believe.

 

 

 

Nivo

Thats exactly what my doctor said. Votrient is working. 800mg a day for almost 3 years. Side effect are minimal. Nivo is where we are going to go when the Votrient stops. Scan 2nd week of January.