Any experiences with Nivolumab and/or Ipilimumab treatment?

Wish we could have gotten into the Nivolumab trial ! I have nothing to offer on side effects, unfortunately, but the results are so promising. God Bless

Hi there! I managed to get on the nivolumab trial as a teenager. I was on it for 3 years and started at the age of 15. I thankfully got off of it around the time covid started kicking off. I come to this forum years later however because I'm starting to realize that certain issues in my personal life haven't been making much sense. While on treatment, I was only on nivolumab. I remember being very tired and groggy. Brainfog was something that really messed up my academics and attendance. My immune system was pretty shot shot as well. My main issue was not feeling hunger at all, which caused me to lose a lot of weight. I was very grateful that this immunotherapy did not cause as many side effects as traditional chemo. In the present I'm starting to realize that cognitively, I'm not the same as I was pre- Nivolumab. I have still have brainfog, the novolumab gave me a gluten allergy, I can't Focus, I cant hold conversations, memory goes right out the window, and my Immune system has not been great either. It will soon be 4 years post treatment, and my cognitive state has just slightly gotten better. The cognitive issues have created issues in my work and relationships. And whenever I ask my doctors and Oncologist, I feel like I get brushed to the side. I haven't found much articles about the after effects of this medication, so I do feel neglected in that case. Result wise, my lung cancer shrank, but did not go away. I've been stable ever since, no growth or spread. I've only spoken to one other person on this treatment, and they have been reporting similar side effects as well. I hope the treatment does you wonders!

My 84-year old father-in-law just had his second treatment of Yervoy (nivolumab) as adjuvant therapy after kidney removal for urothelial cell carcinoma. He's been hospitalized twice since starting.

We're not sure what contributed to what, but the family is stopping that therapy mainly because he's dealing with so many more serious conditions (including failure of the remaining kidney and CHF) and because a Signatera (ctDNA) test just showed no cancer detected, but nivolumab no longer seems to be a priority.

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My dad was on Nivolumab (Opdivo) and/or Ipilimumab (Yervoy) for malignant pleural mesothelioma at age 85.

One oncologist called the combo "ippi-nivvi."

It was fairly hard on my dad given his age, comorbitities (Afib, enlarged prostate, kidney weakness, and mild CHF) and especially the reduced oxygen capacity that goes along with inflammation and fluid in and around the lungs.

He received them both drugs by an IV in the arm; no port required. Opdivo was administered every 3 weeks, and Yervoy every 6 weeks (in conjunction with the Opdivo). He had the same ATM mutation I have, but this combo was not advertised as targeting any specific mutation.

It was only mildly effective on his mesothelioma -- a few tumors shrank and a few grew -- but it may have helped dry up some of the excess fluid. Unfortunately, he had to stop after about 4 months due to excessive fatigue, and was hospitalized for "failure to thrive" shortly after.

Unfortunately, I think his oncologist let the treatment go on way too long. I don't think the ER doctor, his hospitalist while admitted, or his primary care doc after discharge ever administered steroids, which I had heard was sometimes necessary if the immune system got "carried away" with an overreactive response.

He was hospitalized and in rehab for two different, extended periods after stopping the ippi-nivi, appearing better at times, but eventually just getting too tired to eat or move, and passing this past summer under hospice care. Since he stopped treatment last December, there was no follow-on imaging or other cancer-related bloodwork, so we don't know if his death was really attributable to the mesothelioma, continued immune reactions to the ippi-nivi, or the sum total of all that plus his other conditions. His words said he wasn't ready to go, but his body language said otherwise. 🙁

There is prescriber information here: https://www.opdivohcp.com/dosing/treatment-modifications/endocrinopathies (but you might have to click another button saying you're a medical professional to get there). I've attached a screenshot showing some of the content from that page.

Also, in the forums at https://www.smartpatients.com there was a post here https://www.smartpatients.com/conversations/things-every-immunotherapy-pat#top titled "Things every immunotherapy patient must know"

You need an account there to read the posts, but I've attached the entire discussion here in PDF format. It's broken into 5 parts since it was too large to upload as one file.

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So, in summary, I would say a lot depends on the patient and other physical conditions. The ippi-nivi was supposed to be a lot easier on my dad than the conventional cytotoxic regimen of pemtrexed + carboplatin, but was not easy by any stretch given his age and other conditions. He was not being treated at a center of excellence by any stretch. In fact, I considered it all inferior, but he wanted to keep it local to minimize the travel and burden on himself and his primary caretaker (me).

If your mother goes forward with this therapy, I can only recommend having her be VERY honest with the ENTIRE medical team about EVERY side effect and concern she is having. Sometimes the reactions can occur so far from a treatment they seem unrelated, but they need to be considered, especially by others outside her oncology team (like an ER).

Push the oncology for frequent imaging and blood tests to see if the treatment is doing any good, and ask them to consider additional blood testing beyond the standard CBC/CMP to see of there are immune-related abnormalities, non-iron-deficiency anemia, etc.

I wish your mom the best of luck, and hope you'll keep up posted here with everything you learn.

Hi @alpacaattack (love the username), first I want to let you know that there is also a support group for young adults here too:
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

I'm disappointed (and frustrated) that you feel brushed off by your doctors, since cognitive impairment and brain fog are well-accepted short and longterm effects of some chemotherapy. The cognitive effects of newer immunotherapies may still be underestimated. This should not be dismissed. Have you talked to a symptom management oncology nurse or oncology social worker about it?

Others are talking about it here:
- Cancer Related Brain Fog: How do you cope with it?
https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/
Did you have treatment for primary lung cancer or was it for metastasis to the lungs?

Hi All, Seems like a great forum and feels like I finally found people I can share my experiences with. I am 60 years old male and started treatments with Keytruda about a year and a half ago for melanoma. I only found out about the melanoma after a minor fall mountain biking. I had a mole on leg since childhood and it broke, bled and never healed. Sure enough it was melanoma which they removed. About a year later, I had another fall mountain biking and this time I ended up with a big bump in the upper thigh area. Sure enough it had spread and before lone I was under the knife to remove glands in that area. So treatment began with Keytruda and all seemed fine. No side effects, etc. I was still healthy, strong, vibrant and working out 4-5 days a week pretty intensely. At one point I mentioned to my doctor that my balance was starting to falter at times and he recommended a brain MRI. Sure enough there were signs of metastasis up there. So about 4 monts ago I started receiving the combo of Nivolumab and Ipilimumab. At first nothing seemed different from Keytruda but after a recent illness (Covid???) everything changed. I know have a hard time just getting out bed and am constantly lethargic and have bouts of intense chills. I have also lost about 15 pounds and have little appetite. Just wondering how "normal" these symptoms are. My doctor recently changed the scheme to just Ipilimumab (not because of my symptoms but because that was the path we were scheduled to follow.). He said I would feel the toxicity of the Nivolumab /Ipilimumab combo for another month. Again, just curious if anyone has experienced similar side effects. Much appreciated!

I was on nivolumab and ipilimumab for 18 months for lung cancer., with no serious side effects. I did develop hypothyroidism, but have been ok with thyroid medication. Last summer the ipilimumab was discontinued due to new unexplained side effects. These could have been the beginnings of my pancreatic cancer symptoms ( non-mets). I am still on the nivolumab, every 3 weeks. My lung cancer has been reduced. I believe these drugs were originally developed for melanoma. My concern would be that these "side effects " might be from another source.

Thanks for your response. Much appreciated. Sounds like nivolumab has been helping you and I hope that continues. Big hug.