Anyone on the Ipilimumab (Yervoy) and Nivolumab (Opdivo) combo?

I am 3 weeks post-op. The plan is to continue the immunotherapy for 2 years. I see my oncologist in mid-may depending on what pathology shows they may want to theow in a few rounds of chemotherapy, however nothing is confirmed until they see the report.

I’m curious how you’re doing with your port. I had one put in in early March. The doc said I could use Tylenol for 2-3 days but I had quite a bit of pain and discomfort several weeks. I hope you’re doing well with little pain or discomfort.

Yes- same here - I’m on week 2 and it’s much better but still tender and bruised. I used it after 5 days - it was great- worth the pain. I think after this week it should be all healed and then supposedly you don’t even know it’s there - not sure about that.

I had one infusion ipi/nivo
Now on second infusion of nivo only
I had chills fever and headache one week after infusion they think is from a viral infection
Otherwise so far so good
The nurses say they have many patients on this combo but have not heard from many online.
Anyone else have this combo?

My husband is on this combo. Lots of adverse reactions but started immunotherapy and chemo at same time, so hard to say which caused what. Got a weird type of neuropathy or dropped foot, and joint pain, which we think was chemo. Lots of inflammation with immuno. His blood pressure kept going down, very weak and tired, couldn't walk. Ended up with three blood transfusions and three fluid IVs
He developed colitis that didn't get diagnosed for a week because it was more bowl urgency than diarrhea. doctor gave him the opdivo treatment but also started on high dose steroids same day, which is not what seems to be the recommendation. He did great on steroids - appetite/taste buds came back, energy, etc. They were going to discontinue altogether but we were told immunotherapy was only true path to a cure, so we opted to try again. Next treatment (Opdivo and Yervoy) Colitis cage back with a vengeance. Currently back on high dose steroids. He also had IV steroids the first two immuno treatments because he got chemo at same time. Basically only had one or two immunotherapy treatments without steroids so not sure we had much benefit. PET scan showed liver metastases were worse, so they didn't think chemo or immuno did much. We ended up seeing an internal radiation oncologists. He got two of the tumors with ablation. Had planned on doing all for but they had grown too much again. He feels certain that injected radiation beads will take care of other two. Hopefully, that will give us more treatment options for what's left in lung and lymph nodes. The cancer in kind had shrunk, which I think may have been due to just the external radiation. External radiation has caused terrible burning throat but went away after ten days, so we might be able to try that again. The internal radiation oncologist has set up a consult with oncologist and external radiation oncologist for this coming Tuesday. Hopefully they will come up with a good game plan. If I had known then what I know now, I would probably try internal radiation before immunotherapy. To be fair though, according to the oncologist team my husband had had much worse adverse effects than they are used to seeing. Apparently most people get through immunotherapy pretty easily

@leighb , I've seen a couple of your other posts too, and wow, you've both been through so much. I hope the appointment with the doctors goes well tomorrow. Internal radiation for lung cancer is interesting, I'm probably just living under a rock, but I learned a few things from this page: https://www.mayoclinic.org/tests-procedures/brachytherapy/about/pac-20385159
It sounds like you are the primary coordinator for his care. Are you managing to keep your stress level under control? Are you sleeping? What do you do when you just need a break?

@lls8000 I'm doing fine. I was raised to be strong and i have a good support group. If I really need to get away and do something, I can call someone to come stay with him if it's a bad week. When he is on steroids, he is able to do more for himself. Unfortunately, the internal radiation cannot be used on the lungs, but it can be used on the lungs cancer that metastasized into the liver.

@sheland1 did you have the chemo during the same session that you had the immunotherapy? My husband did, so they gave him steroids first. The first month it was hard to tell what adverse effects came from which medicine. He also never presents with typical symptoms. He has something going on with his legs similar to neuropathy but. No numbness or tingling. Painful, heard to lift feet sometimes. That probably came from the chemo.
At this point, I think the biggest problems we've had that are from immunotherapy is colitis. I read that there is a 1% chance of getting it from opdivo and I think it was 14% from yervoy but close to 30% with the combo. He's often tired and doesn't seem quite with it cognitively.. His blood pressure goes low and he's needed blood transfusions and fluid infusions. I now realize that part of it is because he's gotten dehydrated more than a few times. The immuno up his taste buds so it's sometimes hard to get him to eat or drink. We spent 2 days in the hospital this week because he went into afib. 90% sure it was from dehydration so I think he finally understands the importance of drinking, whether he feels like it or not!

@leighb
I was on opdivo/yervoy flipped dose-First infusion was combo then 2 infusions of opdivo - each 2 weeks apart - made it through with some odd side effects after the first combo - second combo infusion - diarrhea started- was put on prednisone but no help- then landed in the hospital for 10 days with immune induced colitis and hepatitis - upper the prednisone and liver function tests started coming down - was on 11 week taper
First scan when released from hospital dhowed no active cancer - 4 mos later new active lung nodule and liver function tests are creeping up
Not sure of strategy - but it won’t be opdivo /yervoy agsin

i’m stage 4 squamous cell. My doctor offered me this combo for immunotherapy based on what I’m reading. I think I’m glad I passed on it. I decided I just need to enjoy the time I have left and went into hospice care. I don’t regret it. I feel more peace with all of this. There’s always gonna be more treatment offered, but the hard part is knowing when to decline it.