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Anyone on the Ipilimumab (Yervoy) and Nivolumab (Opdivo) combo?
Greetings - I have stage 4 adenocarcinoma of the lungs. I’ve already gone through two rounds of chemo and radiation. I’ve recently switched to a new oncologist in a new hospital system. He has put me through the paces of tests including more CT and PET scans as well as a biopsy. I’ve had these things done with prior cancer team but he wanted to retest and I was fine with that.
After completing the tests I met with him this week and he is suggesting double immunotherapy. A combination of Ipilumab and Nivolumab with one every two weeks and the other every six weeks.
I’ve never had immunotherapy before. There was some hesitation due to a bout of colitis I had many years ago. But we are going ahead with it.
Has anyone taken these two immunotherapy drugs? What was your experience with it?
Thank you in advance for your feedback!
Maureen
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Hello Maureen, @detroitmom23 , I'm glad that your change in doctors has been productive. I'm hoping some others may add some input on their experience with this immunotherapy combination.
Ipilimumab and Nivolumab are known under brand names of YERVOY and OPDIVO. I think we've all see those TV commercials.
When do they want to start you on the treatment?
@detroitmom23, I'm delighted to hear that there is an immunotherapy combo that might work for you. I remember you posted a while back that immunotherapy was not suggested for your specific cancer due to lack of specific markers. May I ask what has changed? When do you start?
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1 ReactionThanks Colleen and Lisa…
My new Oncologist feels that I can still benefit from immunotherapy even though I don’t have the markers. Apparently there is new research to support this. I was surprised to hear this. He also could just be throwing me a bone since I’ve been through radiation and chemo twice now. However, he is known for thinking outside of the box and is highly regarded so keeping my fingers crossed.
I was supposed to start the double immunotherapy last week but wt the very last moment we had to cancel because my insurance company denied the coverage. The Dr. is working on appealing it so hopefully I’ll know something this week.
Thank you for reaching out and I will keep you in the loop!
Maureen
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2 ReactionsMaureen (@detroitmom23), you know our fingers and toes are crossed for you too! Hopefully thinking out of the box is just what you need. Hugs.
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1 ReactionWhere are you being treated?
I’m on the same path - same treatment plan starts next week
I had a port put in today
I did not have prior chemo but lots of radiation
Keeping my fingers crossed!
I have the same diagnosis as you with KRASg12c biomarker - pdl1 negative. Don’t think he’s throwing you a bone- there are trials to support the combo- checkmate 227 was just updated with good results
I’ve also been looking for those with experience in the combo - it seems more used for melanoma so maybe it’s relatively new for lung adenocarcinoma - my dr told me the dosing for NSCLC is much less than for melanoma so I’m hopeful the side effects are less - fingers crossed!
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1 ReactionI am on this combo. Started on 3/5/25 on same schedule you will be on. I also have no markers and negative PFL-1 but my Dr thinks I may still respond to dual immunotherapy. I have non small cell Squamous type. Have had surgery to remove right upper lobe and radiation but now has spread to lymph nodes and other lobe. Haven’t had any chemo yet. So far minimal side effects from immunotherapy except occasional itching. Dr says lot of times don’t start until couple months in so guess time will tell if I get bad side effects.
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1 ReactionHello,
I have NSCLC stage 2B, dianosed July 2024. Originally I was scheduled for surgery but the doctor suggested that I would have a much better chance at recovery from surgery if I did treatment first.
The local cancer center wanted to do HIGH dose chemo and immunotherapy. I was opposed to HIGH dose chemo and the oncologist offer nothing else. He actually said I was wasting his time. I then went on a hunt to find another option. I found a center that offered the immunotherapy combo you are being offered. I had one round and became very sick. The doctors didnt seem concerned. (My symptoms were high fever, new cough, coughing up small amounts of blood, difficulty breathing, low O2). After a month, I was finally treated with steroids which cleared up the problems, however I have since learned that my lung was damaged to the point that surgery is no longer an option for me. After changing cancer centers again (one that I am extremely confident in) I learned that the issue for me was that I was at stage 2B and not stage 4. This is a very powerful treatment. My current treatment is LOW dose chemo and radiation, for 6 weeks, 5 days a week radiation and one day a week low dose chemo. My suggestion to you is to watch you symptoms after treatment. Call the oncologist if you have ANY issues. If they don't listen, find another oncologist.
I have NSCLC stage 3c and ive been on chemo and these 2 immunos since sept 2024 i have responded very well with little
To no side effects. My tumor was very large and inoperable and i recently underwent a lower left lobectomy because the immunotherapy shrunk my tumor.
Welcome to Mayo Connect @loritheresa, Thanks for sharing your experience. Are you continuing the immunotherapy and/or chemo post-surgery too? How is your recovery going? Hopefully you'll start feeling better soon.