HLH from ICI

Posted by joancarol @joancarol, 1 day ago

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 | 16 hours ago

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

joancarol | @joancarol | 11 hours ago

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 | 5 hours ago

@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?