I finally developed some EXTREMELY late onset Colitis (or so we think) after Years (YEARS!) of fairly tolerant Keytruda infusions. Here’s some deets on treatment:
December 2014 – Dxed Stage 4 – tumors in bones, possibly liver (reclassified as fatty sparing), distant lymph nodes.
January- April 2015 – Ipi. Eliminated bone pain.
April 2015 – Began Keytruda treatment
December 2015 – NEAD (spots on liver still on CT, but eventually reclassified to fatty sparing).
October 2016- Stopped Keytruda
October 2017 – clear scan
February 2018 – PET showed sub 2 cm spot on right adrenal gland.
March 2018 – Removed right adrenal gland, restarted Keytruda.
Summer 2018 – participated in clinical trial (something to do with T-Cells) and that doctor said my white blood cells were most responsive he’s ever seen. No idea what that means relative to treatment, but making a note. Paused Keytruda for that period
Fall 2018-Present – Keytruda every 3 weeks that was spaced to every 6 weeks. Several scans, all clear (yay)!
April/May 2021 – developed annoying colitis. 5-10 times a day, watery, etc. No blood/blackness. Uncomfortable cramps. Imodium unhelpful.
After doing stool tests, no infectious issues or other signs of colitis. Doc thinks it’s probably treatment related but we both note it’s absurdly late to show up (still immunotherapy is new). Anyone else ever heard of this? I’m getting some prednisone today and hoping that works out. It’s not terrible rn, but I’m a runner and it’s made it impossible to get any serious time outside on a run and the North east has been super cool over may!
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