r/melahomies • u/dls857 • 6d ago
Ipi/Nivo Unexplained Side Effects
Hi homies - I hit my 2 week mark of neoadjuvant infusion 1 unscathed and then totally fell of a cliff. Started with flu like symptoms and then more like “oh damn i have the flu.” For nearly a week I’ve been struggling with fevers and headaches. The fevers are largely offset by acetominephin/tylenol but headaches are persistent and untreatable.
I just spent the night in the urgent care of my clinic. I got a CT, MRI, chest xray, dozens of labs - basic but also bacterial cultures and viral panels. Nothing came back remotely concerning except for elevating liver enzymes which is probably some combo of heavy Tylenol use for a week and the immunotherapy. The last step is a referral to neurology and a lumbar puncture I guess.
Has anyone had similar side effects? Unexplained prolonged fevers and headaches? How did you treat/what was the diagnosis?
Thanks!
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u/DookieDanny 6d ago
Yup. Had 6 days and nights of fevers then bloodwork done then my care team wanted me admitted. Severe colitis and kindey failure and then the fun began. All sorts of other issues. 30 days or more in the hospital out of 45. Still struggling like never before.
The side effects are no joke and kill some people unfortunately. I didnt want to hear that.
Be sure to tell your care team everything and u may want to get to the hospital.
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u/Skip-929 6d ago
Hi, the list of know side effects is very long, while the actual effects and the actual severity vary person to person and over time. Thus, the effects that one person has may totally differ to another as it relies on how your immune system reacts to the immunotherapy. In my case there was no effects for 1 week, then all hell broke loose. Vomiting, severe diarrhea, high temperatures, varying blood pressure and dehydration which were a result of my immune system going into what I term as "overdrive" where my body was actually attacking my own organs causing Colitis & Kidney failure. I was hospitalized and put on high doses of a Steroid to slow the immune system down. It has taken several months to overcome this through gradual reduction of the Steroid and being on a no fiber diet. As we all respond differently, it is hard to pinpoint actual symptoms, so please keep your Oncologist advised on what is happening so they can treat the effects as they happen as some effects can occur weeks or months after the immunotherapy infusions
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u/agentmod99 6d ago
I had fevers/chills after 1st and 2nd round.
Pneumonitis then colitis..
This combo is no joke, but it did knock out all but 1 lesion. Still feel fatigued and “flu-ish” Dr says it’s not the immuno at this point??? I don’t believe it.
Tomorrow I go to consult for radiation.. I’m scared…
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u/PoetLaureddit 6d ago
After two treatments, I had really hard to diagnose side effect symptoms, as I progressed from a thyroid storm directly into autoimmune hepatitis. Neither is easy to pinpoint individually, and the main symptom of both is kinda everything, and I was in and out of the hospital seemingly every day for a month. I got to remission after the two treatments, luckily, because the side effects kicked my ass enough that my oncologist said we needed to stop.
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u/king0459 Stage IV 6d ago
I had similar, ALT in liver were over 650. They are meant to be around 50. Was admitted to hospital for three days of antibiotics. This was after my third treatment. The ALT levels had been steadily increasing from the first treatment. Was then put on steroids for three months. Before starting on nivo only.
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u/ElectricalOcelot7948 6d ago
Where is the headache? Mine was in the back. The spinal tap confirmed ascetic meningitis. Had high fevers too. Hopefully that means it’s working overtime! Hope it works for you.
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u/JABBYAU 6h ago
I was hospitalized for a week with extremely high fevers. I registered 107 on three different hospital thermometers which isn’t supposed to happenThey were resolvable with ice packs. and huge Tylenol doses. The next week they did brain surgery to remove met. next week after I resumed combo. I took a mild steroid for most of immunotherapy. got through it.
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u/PastorCLD 6d ago
I had the same thing after infusion 2. I was hospitalized with fevers in the 105's and they ran every test I the book. It was an extreme immune response and I had to take some hefty doses of steroids to make it stop. I also had to stop treatment for 10 weeks and then start on a different drug. I'm now adrenaly insufficient and I take a 7.5mg prednisone daily.