My beautiful mum has started a trial on Venetoclax, after disease progression at 29 months on ibrutinib. She had a week between medication and the CLL was creeping up in the blood work, but also in a lymph gland, particularly one noteable on in the groin. Night sweats started.
Doses of Venetoclax are staggered so she completed a week at 20mg and now commenced 50mg 3 days ago. She is suffering fevers every 3-4 hours of 39 degrees plus - we are told this is the CLL. Blood work looks good, though nodes are still the same (of not a little bigger in groin). She's very weak, no appetite, now getting blood and platelet transfusions....she's very low and is almost at the point of not wanting to go further.
Has anyone else experienced similar on Venetoclax- did it take a while to improve lymph node size? Any side effects?
We don't have anyone else to chat to this about - trial dr incredibly unhelpful and not forthcoming of info - we feel very stuck