Are we wrong in NOT wanting to do the Combo IPI/Nivo?

It came back, I would do the combo.

I can see your point given that Ken has already had ipi and is now NED. However, there are those who are close to being in his shoes who would do anything to acquire the ipi/nivo combo and can’t get it (like some Stage III peeps who had all obvious tumor removed). Here’s the deal – yes, you make an accurate point that nivo alone is excellent for some folks, esp when begun with a low tumor burden. I am one of those. Did 2 1/2 years of nivo s/p brain and lung mets. Still NED for melanoma 9 years later. BUT –
1. You are dealing with recurrence.
2. Anti-PD-1 alone = about a 40% response rate. Ipi/nivo combo = 50% plus response rate.
3. Folks who do ipi first followed by nivo. This post may interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/sequential-nivo-then-ipi-orr-of-41-ipi.html (I think the title says it all: Sequential nivo then ipi = ORR of 41%. Ipi followed by nivo = ORR of 20%!!!! FDA! Are you listening???????)
3. Now – I’m not saying that the ipi Ken took in 2015 would create this effect, but I would want to minimize that potential and by taking the ipi/nivo combo now I imagine the docs are thinking it would ameliorate any such effect.
4. Yes, ipi is the bad boy of the combo. But, here’s the thing – if the docs start you on the ipi/nivo combo and the side effects are untenable, you can always drop ipi and continue with nivo as a single agent.

Just my thoughts upon putting myself in your shoes given the research I’ve followed for many years. Treatment decisions are very personal. What reason has your doc given for recommending the combo? I wish you both my best. Celeste

I’d lean towards the combo and back off in case of problems.

I faced a similar decision last year when I was diagnosed stage IV. The standard of care that everyone was recommending was the combo. I was very uncomfortable with the risk of side effects. If you look at the statistics from the trials, the incidence of grade III and IV adverse effects goes up disproportionately with increase in clinical benefit. In other words, you get a lot more serious side effects and only a modest increase in overall survival.

https://www.nejm.org/doi/full/10.1056/NEJMoa1709684

Now, on the other hand, the combo can often give a quick and durable response, and as Celeste points out, the IPI can be stopped and monotherapy continued with Nivo if side effects do occur. It’s a tough decision. I ended up choosing Nivo alone because I was risk adverse. As it turns out, I ended getting diabetes and colitis from the Nivo. and I got kicked off all treatment in April. So much for avoiding risk! The good news is that I had a good response from the Nivo alone and my last two scans have been clean (no active disease). Obviously, this is a big YMMV.

The doctors I’ve seen are all surprised that I chose monotherapy over the combo, but I was lucky that my original oncologist at Dana Farber was supportive of my decision and didn’t try to pressure me into choosing a treatment that I was uncomfortable with. You are not crazy in your thinking. You have to do what feels right to you. I hope that the doctors you see will support you in whatever treatment decision you decide upon.

Good luck,

-RIch

2012 – melanoma in my brain and pretty much every organ. Some brain surgery, Gamma Knife and THE COMBO. Been NED since August 2012. Love the combo – hate the melanoma. Let’s keep Ken around.

Your wanting just nivo immunotherapy is reasonable. In your situation I would want just nivo. Melanoma was in several of my bones in March 2016. After ipi + nivo immunotherapy my bone cancer disappeared. I continued to receive nivo immunotherapy. Melanoma appeared in a lymph node in April 2018. I had radiation to it and continued nivo immunotherapy. This tumor was less active in my last PET scan. Since your husband is NED, I think just nivo is appropriate. I was very sick after my first ipi + nivo infusion.

I’m new to this and 2 days ago my oncologist recommended Opdivo. There are so many variables in treatment that we can’t possibly know what’s right for any patient.. An experienced oncologist should be able to make these decision for you, or at least explain the basis for the recommendation. Mine did both and I have great confidence in her expertise. If you can’t accept your oncologist’s advice, maybe you should get a second opinion or a new oncologist you have faith in. None of us can recommend what’s best for you. We lack the education and training and don’t know the details of your history. Good luck with your decision and be well.

Hi Cammy “Jewel” , I was following this post yesterday and a couple of thoughts came into my head this morning which I am going to share with you if that is ok!!! First, there will be a link that follows of checkmate 004 trial and the 4 year survival data. This was the first phase one ipi+ nivo trial that led to checkmate 069 then checkmate 067 phase three trial that I am on. What is interesting is the long term survival with ipi+ nivo is pretty amazing and it seems to be durable which is also important. Now, the thought that came into my mind about being in the woods is side effects and having quick access to knowledgeable treatment since quick intervention is super important in treating IRAE’s (side effects). Both nivo or the combination of ipi+ nivo have risks of side effects (IRAE’s) but the data on ipi+nivo shows that you can pretty much count on having issues that will require intervention. One positive side of these side effects is that those that have to stop seem to do as well as those that get treatment for long periods of time. So you could possible get a couple of treatments and need intervention on side effects and then stop completely and be done with treatments and do great long term. I know that is kind of a crazy view of treatment but the data shows that this is a pretty common outcome with the combination. On the other side if you can get nivo once a month and sail through treatment without major issue you could also have long term success.I really have no idea which is the better approach for Ken, one question I have is what is his LDH levels, if low then again data shows better outcomes and Pd-1 might be the suitable choice where if LDH is high then combination might be the better way to go. Here is the link and best wishes for a great response which ever way you go!!!Ed https://news.bms.com/press-release/corporatefinancial-news/five-year-survival-observed-longest-follow-date-advanced-melan