First post here. I'm posting on behalf of my mom. She is 66 and has had CLL for approx. 10 years. I think 17p, but I'm not certain. She underwent 3 different rounds of chemo (I don't know all the combinations, but all involved Rituxan) and eventually went on imbruvica. After 3 years, she failed on Imbruvica due to disease progression. Her last bone marrow biopsy was 78% leukemic. She stopped Imbruvica two weeks ago in preparation for Venetoclax. She ended up in the hospital for 5 days after receiving two days of infusions to prepare for the Venetoclax. Horrible pain, unable to keep anything down (her first dose of V came back up after 5 min). Her WBC was 245 when she was admitted. They explored her heart, lungs, even thought she had a mild stroke but ultimately decided the pain was from the disease advancing.
After a few days in the hospital on steroids to temporarily bring her WBC down, she started Venetoclax again. Everything was going smoothly and she was discharged on day 3 of V (last Thursday - her WBC was down to 164). She is currently experience disorientation, even hallucinations (at best, vivid dreams that cause her to think people are coming In the house, etc). I can't find anything in the literature about this possible side effect. Her husband has spoken with a nurse who said to discontinue if things get "worse" (kind of subjective, if you ask me) but that 14% of people experience disorientation and a subset of those is related to kidney issues. They go back Wednesday for blood work.