I’m 47, on Ibrutinib for 17 months (initially with Rituxan) and was incredibly fortunate to have my numbers back in totally normal range within a few months. I only missed ~2 months work despite being diagnosed Stage IV. Very few/minor/easily resolved side effects. Count my blessings daily. I’ve been back to strenuous workouts (via iPad) with my trainer 3X a week since May and got used to feeling so much better than I did for the 2-3 years before my diagnosis.
HOWEVER... in the past month I seem to have hit the fatigue everyone talks about. Not on the same level as right before/after diagnosis, but enough to impact my quality of life. I’m lucky to be WFH but find myself needing to crash on the sofa or bed between conference calls and ready for bed by 8:30 or 9, despite getting a pretty steady 7-8 hours of sleep a night. I’m resisting amping up the caffeine but some days I can barely function — and of course I’m not “on the go” thanks to COVID, and right now I can’t imagine having the energy. This week was my quarterly checkup and once again my doctor was over the moon about my numbers... as am I, but I am really hoping this resolves. (I did mention that the fatigue was worse, and my doctor listened but basically said “fatigue is a real struggle for some people but I think you’ll even out” and said basically everyone is reacting to stress, lockdown, etc. which makes sense.)
I worry that I was in some sort of early treatment “honeymoon” and that this might be the new normal. Has anyone had a similar experience? Is the fatigue transient or constant? And is there anything that seems to help? Again I am incredibly thankful to be medically in such good shape but hope to have the energy to do more than work all day and then crash 2-3 hours later. Really appreciate this wonderful group’s advice.
