Anyone get HLH from ICI (immune checkpoint inhibitors)?

Posted by joancarol @joancarol, Nov 18 8:05am

Just wondering if anyone out there also got HLH (hemophagocytic lymphohemangiocytosis) from an ICI. I got HLH encephalitis from my first dose of Tecentriq and almost died (literally, on the vent and everything ). That was Feb 2025 and was finally discharged from inpatient rehab in May. My body is still weird (strange pain and fatigue in the evenings) and wondering if anyone else has had this condition.

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mamajite | @mamajite | Nov 19 2:36am

I'm so sorry that happened to you @joancarol. 😢🫂 Are you still receiving cancer treatment?

joancarol | @joancarol | Nov 19 7:33am

In reply to @mamajite "I'm so sorry that happened to you @joancarol. 😢🫂 Are you still receiving cancer treatment?" + (show)

@mamajite
I am under surveillance only at this time

Lisa, Volunteer Mentor | @lls8000 | Nov 19 2:01pm

@joancarol, Oh that's scary. I'm so glad that you were treated and were able to recover enough to get back to your life, even with the lingering effects. What stage of lung cancer did/do you have? How often are you getting scans?