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Looking for Data for NIVO VS IPI/NIVO

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Looking for Data for NIVO VS IPI/NIVO

Posted By
THMoore
9/8/2020 9:52pm
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Replies: 14

Today I had my first infusion of IPI/NIVO. I met with a backup oncologist because my primary was on vacation. She explained that since I was on NIVO and had a new tumor appear in my liver, The IPI/NIVO would now only provide me a 30 % chance of survival. I had partial success with 3 NIVO treatments, 6 small nodal tumors either went away or decreased in size and are no longer showing active in a PET. So have many of you had success on IPI/NIVO after partial success on NIVO? Or has anyone heard that there is only a 30 % chance of IPI/NIVO working after partial success on NIVO. Everything , I read gives the combo a 50 to 60% chance. As always I truly appreciate your responses.

Thanks Trent

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/seque...

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%...

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

Sorry. Just realized I said that backwards in the last sentence of my first paragraph! It should read -

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 IPI first and followed it with NIVO.

Sorry, if I caused more confusion!! c

Thanks bubbles. Feeling really down after talking to the Dr. she said Chemo would be next and they would determine what clinical trial they recommend. In addition she said without further treatment, less then a year.

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?

I only have a BRAF K601E Mutation. The Dr said Chemo or clinical trials is all that will be left.

My melanoma is BRAF negative. In March 2016 my oncologist told me that I had less than a year, if ipi/nivo immunotherapy failed.

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

Thx Ed. I BC appreciate your response and information. I have been diving into everyone’s profile. Seems like the ones that did IPI/NIVO did better then the ones that took NIVO and then moved on to the combo. Man I just need a little good news for once.

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!

Thank you for taking the time to respond. Seems like every time I go to MDA. the news gets worse. Running out of options.

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

Thank you for the data and information. In addition all the kind words help tremendously. I hate when we got to MDA and you are a number or statistic with some doctors but others are positive. HUGS

Trent

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

Please know Mis Mel I am a fighter. Breaking my neck at 16 years of age and gaining the ability to walk in 2 years was crazy hard. The Drs said I would be paralyzed from the neck down for life. But those Drs encouraged me, treated me like their own kid and gave me the tools to recover. Now 40 years later, the hospital I was in for 2 years, I end up across the street at MDA in Houston I was misdiagnosed 4 times to include MDA. I have had a great surgeon, but others have treated me like a number. I get it, but positivity goes along way. So I turned to the forum to help me. Just as I want to help others. That’s what life is about. Helping, encouragement, positivity, mentoring on and on. I want to live, I want to fight, but damn it, I expect to be treated like a human being not a damn statistic. I love all of you guys and have learned a ton. Right now, I just need something positive and go in the right direction for once. HUGS FOR ALL CANCER AND MELANOMA FIGHTERS OUT THERE. YOU GUYS ARE AS TOUGH AS THEY CONE.

Love Trent.