Hi Lisa,

Thank you! We received gene test results back in February 2019 after my wife had already started on Keytruda (the Dr didn’t want to stall treatment while awaiting gene test results). Her test showed a 60% expression for PDL1 and a 67% expression for ROS1.

She did very well on Keytruda for the first 13 cycles or so; partial remission with virtually no side effects. The last three cycles she began to experience a very gradual slowing down in her digestive system, despite continuing good results from her scans. After the last cycle she experienced moderate pain in her gut for the first time, sometimes almost immediately after eating. We ordered a scan and in the meantime tried a 24-hour clear liquid/jello fast to try to press reset. This definitely helped and she’s pain-free today and back on a regular diet. Feels fine in fact. Bloodwork as of last Friday is excellent.

All of this is a head-scratcher for her oncologist bc the most recent scan (while she was having the abdominal pain) shows newly swollen lymph nodes in her abdominal area. All of her previous affected areas show mild shrinkage to steady state. She also got an A+ on her last PET scan in October, and she feels much better now than she even did a week ago.

So for now we’re suspending treatment, watching the lymph nodes in the abdomen, and will go back for a visit (and probably another scan) in the mid-January timeframe. We do know we have the unused ROS1 genetic therapy in our back pocket if we need it.

Which is a long way back to my original question: what experiences, if any, have people had with swollen lymph nodes linked to their Keytruda treatment? I know it’s a possible side effect; I was just looking for real-life examples. @richcolleen seems to have had similar symptoms to my wife at about the same stage of the same treatment regimen (!), which was definitely helpful to learn. But I’d love to hear from people with real-life experiences of swollen lymph nodes linked to their Keytruda treatment.