Well my energy returned within weeks of starting treatment. It might have helped that I had two platelet transfusions. Also very quickly I went back to walking.
I'm so glad you're doing well, Migirl. It's great that the fatigue has left you.
I've been on Ibrutinib for 20 months now, and like with you, my haemoglobin levels have been a problem. They are slowly picking up now, but they dipped to start with and took a long time to recover.
Hi and thanks for bothering to announce your anniversary. It's really encouraging to read about positive news - especially for those with some anxiety about their future treatment. I'm on day 17 of Ibrutinib and doing ok. I feel rather 'spaced out' on and off during the day, with a mild non-specific headache and can hear my own heartbeat rather like a tinnitus. Oh - and having lived for over 20 yrs in a hot climate, + most of my life on sailing boats, I have more than my fair share of sun damage - all of which is now becoming highlighted on my skin.
But I'm determined to manage it all and now working towards introduction of Venetoclax on week 9. All this brings me back to saying it's great to read of your good news one year on. Congrats and good luck!
I was re-reading posts I'd favourited and this stood put: "can hear my own heartbeat rather like a tinnitus" - I was diagnosed CLL in 2012 (13q del) and am still W&W but I've been experiencing this and light-headnedness for the last few months (which, as a life-long meditator I don't mind at all, or am used to).
Presuming the "hearing your own heartbeat" is something else, but wondering if anone else experiences this…
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