I’ve been taking ibrutinib for 13 months; started just 3 months after my diagnosis due to 17(p) deletion. No idea how long I’d had it, no symptoms, enlarged lymph nodes showed up in a physical prior to THP surgery. I’ve had a few side effects, some of which were temporary, but the one that is the most limiting is the fatigue.
Fortunately I had just retired from teaching at age 62, thinking I would sub for a few years (change of plans on that). I’d been pretty active most my life, at times working two or three jobs, sponsoring lots of extracurriculars activities a school - while being a single mom. Gave up working summers at age 54. Anyway, I realize that part of my slowing down may be due to age & other external factors (like a significant leg-length discrepancy as a result of the hip replacement). I thought maybe the fatigue was due to the CLL, but my son reminded me that it didn’t start until after I’d been taking the meds for a month or so.
I’ve learned to pace myself, like when I have to run to town to do errands, I make a list of what I need to do in order of priority, in case I run out of steam. I try to schedule activities or appointments on an every-other day basis, so I have a day to “recover”. When at home I take frequent breaks, sometime nap in the afternoon. My oncologist says “get more exercise”; some days I feel really good - other days, not so much.
Has it ever let up for anyone?