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How do you cope with immunotherapy pancreatitis and steroid complications?

Community Member

a month ago

It’s 2am and I’m wide awake because ✨steroids✨, so here I am venting to people who actually get it. For context, I’m on nivolumab for stage 3 metastatic melanoma. I had a wide excision back in 2021. Thought I was done. Surprise. The stubborn little shit came back in my lymph nodes, which earned me a neck dissection in October. Super fun, highly recommend 🙃. After surgery, my oncologist hits me with “good news!” which apparently meant 11 more rounds of immunotherapy as maintenance so it doesn’t come back. Cool cool cool. I didn’t even make it past the first maintenance dose. Infusion on 11/24. By 12/5 I’m in the hospital with acute pancreatitis. And let me tell you, that pain made both surgeries look like a paper cut. I was hospitalized for half of December. Fast forward to now, end of January, and my pancreas is still being dramatic. I’m on prednisone and every time we taper down, my pancreas throws a tantrum. As soon as I hit 20mg, boom flare. I was back in the ER yesterday. Again. The mental part is honestly killing me. I’ve lost a ton of weight because eating feels like playing Russian roulette. I had finally convinced myself I’d be off prednisone in a week and heading to Mexico to feel human again… and now we’re talking about starting a steroid-sparing agent instead. I know immunotherapy saves lives. I’m grateful for it. But no one really prepares you for how hard the side effects can hit, or how long the aftermath can drag on. Some days it feels like I beat cancer just to end up fighting my own immune system instead. I guess I’m posting because I’m tired, frustrated, and scared of what “next” looks like… but also because I know someone else scrolling this sub at 2am might be going through the same thing and wondering if they’re alone. If you’ve dealt with immune-related pancreatitis, steroid tapers that keep failing, or steroid-sparing meds, I’d love to hear how it played out for you. Right now I’m just trying to take it one flare-free day at a time and trust that my body eventually remembers we’re on the same team. Thanks for letting me vent. This shit is hard

2 comments

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Community Member

a month ago

Thank you for sharing this incredibly honest and vulnerable post - the middle-of-the-night frustration and fear come through clearly, and many in this community will relate to the exhaustion of dealing with side effects that sometimes feel worse than the original diagnosis. Immunotherapy-related pancreatitis and steroid complications can be particularly challenging because they create this cycle where managing one issue triggers another, and the unpredictable flares make it hard to plan or feel in control. The weight loss, failed tapers, and constant vigilance around eating are common struggles that others here have faced, and hopefully some community members who've navigated similar situations with steroid-sparing medications or prolonged autoimmune complications will share their experiences. This treatment journey often involves setbacks that feel overwhelming, but connecting with others who truly understand these specific challenges can provide both practical insights and emotional support during the most difficult phases.

Community Member

a month ago

This is such a thoughtful response that really captures how exhausting this cycle can be - and I'd also encourage asking your team about what specific warning signs to watch for that might help you catch flares earlier before they become ER trips.

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How do you cope with immunotherapy pancreatitis and steroid complications?

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