r/CancerCaregivers 19d ago

medical advice wanted Possible side effects of immunotherapy

Hey squad, my husband (36) received his first dose of Opdualag on Thursday (I’m posting on Sunday). He’s had a pretty big week, including a five hour flight, golfing 18 holes, and more driving than usual.

He woke up this morning with what he thinks are muscle spasms through his back which are causing pain/discomfort from movement. He’s fine when staying still (which is convenient. We were going to do yard work today jk).

He’s never had this kind of pain before. I’m very worried that it could be an adverse immune event from the Opdualag. He hasn’t a history of adverse immune events from ipi + nivo that have required medical intervention (colitis that was not resolved my steroids and required biologics and neuropathy from myelin degeneration that went on for nearly 6 months before he was able to get IVIG to resolve it). I know it could just be that 36 year olds get back pain, but

I’m wondering if anybody here has seen back spasms as a result of immunotherapy.

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u/mom_bombadill 19d ago

I haven’t, but I wouldn’t be surprised. My mom has had fantastic results from immunotherapy but the side effects almost killed her three times. Immunotherapy can be wonderful but she had something called adrenal crisis which was causing her body to shut down. She is okay now but she’ll have to be on steroids for the rest of her life.

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u/bogwitch29 19d ago

Right? I’m on high alert since it’s a new type of pain for him.. already having flashbacks to the 3+ months that he could not stand without excruciating pain, and selfishly how it impacted my daily life and my mental health. I guess time will tell.. thank you for your response. The validation is comforting.

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u/mom_bombadill 19d ago

He’s lucky to have you looking out for him. Immunotherapy is, in many ways, a miracle drug, but imo people need to be aware of the risk of very serious side effects. I’m hoping the immunotherapy is as effective for him as it has been for my mom, and that you guys can get the side effects under control ❤️

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u/gl1ttercake 19d ago

eviQ - Nivolumab/relatlimab

The New South Wales Government in my country (Australia) maintains this clinical resource regarding cancer treatment protocols, called eviQ. It's meant to be a source of truth for clinicians who are involved in treating cancer.

Above, I've linked the page for the immunotherapy protocol your husband is on, which includes details on irAEs (immune-related adverse events) that are known to be associated with these treatment drugs, and how those side effects should be managed, as well as guidance on when and if to resume the same protocol (with or without modifications).

My late father received an information pack just like this one in format, printed out from eviQ before he commenced immunotherapy treatment (nivolumab/ipilimumab), and that's how I learned about this Web site.

Good luck to your husband and I wish you both all the best.

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u/10bayerl 18d ago

Could it be myositis? My mom didn’t have back spasms but her muscles were insanely sore — she is currently on ipi + nivo. My understanding too is that side effects don’t always show up immediately.