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.
Yes, she has been consuming the recommended amount of water. She was on a huge amount of painkillers in the hospital and her husband thinks it may be related to withdrawals. I sure hope so, because I would love for this medication to be effective for her.
Pain medications (and withdrawal from them) can definitely cause the hallucinations. Hopefully the Venetoclax will work and the effects of the medications will resolve quickly. Don't hesitate to keep asking the doctors -- it is times like yours that are when we really need them to use their best skills. Virtual hugs to you all.
The following mentions hallucinations---and I believe venetaclax makes for rapid reduction: I'd be calling the Dr. and asking about the possibility if you feel an urgency and this state is still happening. I could be wrong, of course.
The clinical spectrum that is associated with Tumor Lysis Syndrome or TLS is caused by the overwhelmed homeostatic mechanism of the body. ... numbness or a tingling sensation; decreased urination; restlessness and irritability; seizures; delirium; confusion; hallucinations; weakness; irregular heart rate; diarrhea; fatigue ...
Thank you! Her husband did call the nurse a couple of days ago and is calling again today. He spoke with a friend who is a RN home nurse for cancer patients and she advised him to resume the pain meds He did and said she was doing much better last night, so I think/hope it was withdrawals. I advised him to ask the doctor tomorrow about tapering off the pain meds since she isn't in pain
Is it normal to go 6 days with no medical contact beginning on day 3 of treatment with V? This seems like a long time to go with no one checking counts, etc on a new, somewhat experimental drug. They are thinking about switching docs after all this mess.
The following site may be helpful to you in figureing out what has been done to this point--and it describes dosing prep as well as dosing and dealing with side effects.
I hope it helps you to make the decisions you need to make. (It does appear to me--but I don't know the specifics of the situation, that close monitoring is needed.)
my husband had hallucinations for the first few weeks on a preventative anti-fungal, voriconazole. he said whenever he shut his eyes it was like changing the channel.
Hello, did you ever find out if the Venclexta was causing the hallucinations? My father-in-law is experiencing this terribly
I thought about your post and I'd like to put on a question for all of you.
Are you sure the hallucinations, tiredness and so on, are venetoclax effects or Ibrutinib? I' m speaking for myself, I'm on Ibrutinib for about 22 months, and since 2 weeks ago I can not sleep well, can't stay alone in my room because I always feel scared, can't close my eyes to sleep because I feel there is someone in my room (the worse thing is that I always see my father, who died 3 years ago). My husband is getting very worried and we don't know what to do.... ( I didn't want to tell this to anyone because they could call me crazy but since I saw this post decided to write).
Hello! I am sorry you are having these side effects! My father-in-law took Ibrutinib for 3 years. It was great until he started thinking someone was coming in his house at night and pulling on his toes. He then started having extra PVC’s with his heart so July4, 2019 he switched to Venetoclax. Within a week he started seeing people in his house at night. Then he started feeling like his home was not his. He now thinks his parents are alive. We still can’t convince his dr’s it is from these meds. It came on so fast. We have tried to rule everything out. Have you discovered answers?
Hello All! This is my very first post/response. I believe I may answer many of these questions, at least I hope it helps! As we know all cases are different. But this is the very first mention of hallucinations relatingto Venetoclax, si I had to speak up........My mother was on Imbruvica for almost 2 years and did very well! Until it stoped working due to her 17p deletion. Her doctor decided to put her on ventoclax. Due to the concerns of TLS we decided upon hospitalization for constant monitoring. She was admitted 2-19-18. Also started Venetoclax the same day. Within 2-3 hours after receiving her very first dosage, I noticed signs of delirium. As the day progressed she would only get worse. She started having hallucinations also. By the end of her first week of taking Venetoclax, she could not even be alone. She was no longer able to feed herself, couldn't walk without assistant, and she started ripping out her Ivs. I allowed any and all test the doctors ordered (for the next 2 weeks) hoping to find an underlying cause to her behavior and mental state. Unfortunately nothing was ever found! I was by her side 24/7 for her 19 day hospitalization..... So I can say without a doubt in my mind, the Venetoclax was 100% causing her delirium and hallucinations. I had 1 nurse listen to me, and she watched it happen, 2-3 hr's after each dose it'd start. Well she was my angle! She notified the head doctor of the entire floor of that hospital. She also put her job on the line and stopped giving my mother her medicine. We brought her home on 3-9-18 and she peacefully passed away at home on 3-12-18..... So y'all please don't take the hallucinations or delirium lightly speak to your doctor about! Wish you all the very best!
Thank you for sharing that distressing news concerning the loss of your mother to help others like Hidden . When rare/previously not reported/recognised adverse events occur, it can understandably be hard to be heard. Sharing your experience, witnessed by your mother's nurse, will help others caught up in similar circumstances.
I have yet to find any mention of these side effects anywhere, besides this post. And believe me I have been searching high and low from the start of her treatment. In ways, coming across this post has put my mind at ease. We weren't crazy after all! But like my mother's oncologist, some doctors aren't willing to admit that it was Venetoclax, which leads to these cases never being reported. Wish all of you the best alone your journey's!
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