Looking for Data for NIVO VS IPI/NIVO

Hey Trent,

Glad you got started on you ipi/nivo combo. Immunotherapy response comes with many variables, some we understand – some we do not. It is also very hard to find clinical trials that really examine things in a consistent manner and compare apples to apples. That is understandable in some ways – frustrating and a pet peeve of mine in others. However, overall, it is true that patients who are naive to immunotherapy do better on ipi/nivo than those who have already had some other form of immunotherapy. In fact, back in the grey days of melanoma (when we actually had immunotherapy, but didn’t really know what we were doing with it) the FDA, decreed that one could not take anti-PD-1 (nivo or pembro) without having first failed ipi – even though we knew that when patients took anti-PD-1 FIRST response rates were much greater than in patients who took nivo first and followed it with ipi. Here are articles that report those results (and my rant as well, additional link within): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/sequential-nivo-then-ipi-orr-of-41-ipi.html

When you look at patients who do take anti-PD-1 first, but progress and then begin the ipi/nivo combo, we have learned that many of those patients can gain a response, though your nurse is on the right track. Treatment naive patients do demonstrate a 50%+ response rate, while unfortunately that rate is diminished in patients who have already taken anti-PD-1. Here are articles on that subject:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ipi%2Fnivo+after+failing+anti-PD-1

I would not let this lead to decreased hope of a response. There are many on this board – alive and well today – who progressed on anti-PD-1, but then responded either with additional treatment with ipi or the ipi/nivo combo. Hang tough. Melanoma suck great big green stinky hairy wizard balls, but you got this. Celeste

Suppose treatments A and B are considered for stage 4 melanoma. Treatment A is begin with ipi/nivo. Treatment B is begin with pembro or nivo and if that fails switch to ipi/nivo. Treatments A and B have about the same success rate. One study found that ipi/nivo succeeded for 21% of people for whom nivo had failed. My melanoma became much worse, while I received pembro immunotherapy. Then ipi/nivo made my melanoma disappear. If ipi/nivo should fail you, other treatments may work. What is the BRAF status of your melanoma?

Hi Trent, this data was published at ASCO on results from study of 330 patients on retreatment of either ipi after pd-1 failure or combination of ipi+nivo. The 30% number probably comes from this study, so again it is based on retrospective data and #’s are small and 30% is still a pretty solid # in my opinion. Best of luck!!!Ed https://meetinglibrary.asco.org/record/185644/abstract

I failed both Nivo and Pembro at separate times. My doctor then gave me the same data you listed. However I then had a complete response to IPI/Nivo. I relied on data for everything before the combo. After that I knew that it and God was all I had. It CAN work for you forget the data!

Trent I am sorry you are facing all this. I know how frustrating, painful and horrifying melanoma can be. I had brain and lung mets in 2010 before BRAF inhibitors or ANY immunotherapy was FDA approved. I was rather cavalierly told by my radio/oncologist that I would be back within months for whole brain radiation and had about 6 months to live overall. Well – I’m still here!!! The data deserves recognition and understanding. But, the thing to remember is actually the headline that I titled that post from 2015: Sequential nivo then ipi = ORR of 41%. Ipi followed by nivo = ORR of 20%!!!! Those are the facts. Folks who took nivolumab (Opdivo) followed by ipi had an overall response rate of 41% while the poor souls who took ipi THEN nivo had an overall response rate of only 20%. You took nivo. Now you are taking ipi/nivo. Does the data show that those who take ipi/nivo from the start respond better? Yes. However, do folks who take nivo and then follow-up with either ipi or the ipi/nivo combo still get a response. YES!!! A lot of the time. All these peeps are here telling you that! So – hang in there. Let’s see what happens. There are some promising trials that you could participate in if you must. (I am here because of one!!!!) But, I am very hopeful that that is something for which you will not have the need. celeste

Trent, the key is not what works for everyone because actually there is no such thing but what works specifically for you. No oncologist can tell you that any specific treatment will work for your specific melanoma or any melanoma for that matter. They do not even know exact dosages or number of treatments required. They can only talk in general terms because this is the only information they currently have. In time, new information will become available. I know this is extremely difficult for people to understand.
For me, two oncologists, clearly stated that I have 6 months at most. Oct. 12 th will be 2 years and I am still kicking. So please, try not to concentrate on the pessimistic side of treatment. Instead give it your all and mentally think positively about your treatment and fully beliebe in it!
Mind is an extremely powerful thing and when you see a goal in sight, your mind will show you the way. Please give it your best shot. Numbers carry you only to a certain point, after that it is a mind game to take you over the finish line. Don’t sell yourself short. Allow the treatment to work and believe in it 100%.
You can and you will and we are all behind you 1000%.
Melanie