After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax.
My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45
It has been a hell of a week with threats of TML - he had to be admitted to hospital and was released on Friday - he can't seem to function. Blood levels and nodes are currently out of control. Hugh side effects, nausea, fatigue, low grade fever, diarrhea, water retention due to IV hydration and as you mentioned emotionally struggling . He feels worse then after 6 rounds of FCR.
We are back tomorrow to start 50mg and he is terrified - your post has helped us as most folks don't have these many issues. He desperately wants to see a change in the nodes to give him the confidence that the treatment is working. However he will need to be patient as our oncologist stated that it will take at least 4 weeks to see benefits.
You are not alone in your initial experience - this "odd-ball" experience has not be fun. Like you we didn't have a choice - fingers grossed that he will be able to get over this and next step is stem cell transplant.
Thank you for listening.
CANCER SUCKS ASS