Pleomorphic lung cancer with met exon 14 deletion and HLH from ICI

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

@mamajite
I am under surveillance only at this time

@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?

Stage 1B pleomorphic with high risk features and met exon 14 deletion so q3m for now

@joancarol, I believe @trudyhs also has MET exon 14 deletion (METex14).

Am now almost 18m after diagnosis of stage 1b pleomorphic lung cancer with met exon 14 deletion after not being able to finish a 60 mile bike ride as a lifelong athlete, wellness/fitness person. After resection locally had MDA consult and received chemo x4 and then one dose of Tecentriq (the immune checkpoint inhibitor) and eight days later developed a fever and then declining mental status and lab trends and a bone marrow biopsy led to the rare diagnosis of hemophagocytic lymphohistiotosis (HLH) encephalitis. Lost consciousness and my airway and ended up on the vent. After a few days of high dose steroids, Anakinra, and PLEX, I woke up but had a poly neuropathy with left arm and bilateral leg weakness. Months of steroids and inpatient rehab and was able to walk again about five months later and can now do many activities, although I have limited endurance. Last CT without evidence of recurrence but the high risk features of the tumor (including lymphovascular invasion) weigh over me as I could not do the immunotherapy.Has anyone had anything like this?BTW, kudos to Brooke Army Medical Center in San Antonio where I was visiting for making the rare diagnosis and starting the unique treatment plan that saved me and my brain!

I also had a diagnosis of stage 1B pleomorphic lung cancer. These pleomorphic cells seem pretty aggressive. Beyond that, my experience has been different than yours and though miserable, it has not been as intensely scary as yours. But I'll share anyway.

I had a left lower lobectomy last May and the advice from my surgeon, oncologist and from a second-opinion (Dana Farber in Boston) was that I should not have further treatment. However, it turned out that it spread to lymph nodes near my left lung and I have recently finished six weeks of chemo/radiation (actually it was only four weeks of chemo because my blood counts had dropped too low to continue). Unfortunately, though it's not yet clear whether this did anything for the lymph nodes, my cancer has now spread to a spot on my right lung and a spot in my brain. I will find out this week what the plan is.

@elyser
Preying for an effective plan. Yes, this type of cancer seems particularly nasty.