I experienced extreme anxiety and depression while taking Calquence. I would notice a decrease in my general anxiety when I wasn't taking the drug during the 2 year period before achieving a remission from CLL. I was off the drug for several minor operations: colonoscopy, dental surgery.
I'm off the drug for 3 months now & I'm becoming less anxious, calmer and more like my very active self again. The pharmacist at our local rural hospital examined the known side effects and reported that 20% of patients suffer with anxiety while on the drug.
Any feedback on this issue would be appreciated.
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dontruminate
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I am on Venetoclax so can't help with this one but I have lots of annoying side effects and when I was looking them up I came across some strange ones (for Venetoclax) that can effect your mental health as well (see attached). If Venetoclax can cause them then I'm sure other leukemia drugs can too. Sorry to hear that, it must have been terrible ❤️
thanks for info Poodle2. I was on Ibrutinib and it made me feel even worse. Yes it has been an awful time. And the Dialectical Behaviour Therapy course I finally received via oncologist was helpful in learning about anxiety regulation and interpersonal behaviours, it didn't help me so much with my anxiety.
What you have listed are some pretty severe symptoms and I can relate to them. I was labelling everything in my kitchen, if you can believe it, because I wasn't sure I could find them again! By 4 pm in afternoon the rolling anxiety and dread would start. God the price one pays to put blood cancer into remission. I hope my current remission lasts a long time!
I am so sorry. It really must have been absolutely awful. I'm glad that things seem to be getting better. I was quite taken back when I came across these less common side effects of Venetoclax. Luckily, I do not have any of these but for them to be mentioned, there must have been people who experienced all of these...not much a choice for us though, right.
Really hope you have a very very long remission too 🙏🏻❤️
I have noticed a definite increase in my anxiety, I am now one one year into treatment with Acalabrutinib, but put it down to other circumstances.
Coincidently in my next appointment with my consultant I need to discuss pausing treatment for dental work and a colonoscopy. These were postponed as they don't like to pause treatment in the first year.
It will be interesting to monitor my anxiety during the forthcoming pause in treatment.
I never had anxiety before starting Calquence. When I started Acalabrutinib (Calquence)it was terrible and I became manic. I blamed the Prednisole but then the anxiety continued for 2 years after stopping Prednisole.
I then blamed the pandemic and the continuous lockdown and being anxious every time I had to leave the house for a medical appointment or when someone knocked on the door.
Recently the anxiety has stopped and I can't explain why. The point is that there are so many things at the moment that could make us anxious it's difficult to say if it is Acalabrutinib. It may just be a coincidence that my anxiety stopped around the time the consultant told me I'd had a complete response to the drug and my scans were looking good.🤷♀️
yes the last 3 years have been upsetting to say the least, for all of us! I do have an anxiety disorder, pre-treatment for CLL & I had a masectomy & lumpectomy, FCR first treatment for Cll, but only obtained a 6 month remission. To sum up: I have been through hell (along with a bunch of us CLLers) but Ibrutinib increased my anxiety immensely though controlled cancer. I demanded that my oncologist put me on Calquence and it reduced my anxiety somewhat. Now that I'm in remission and not taking any BTK inhibitors, my anxiety has lessened in the last 3 months. So to conclude this might be because I'm in remission and my scans are good too. But I think that both drugs Ibrutinib & Calquence cause anxiety as the pharmacist at the hospital told me the drugs cause anxiety in 20% of those taking the drugs. I just can't get any medical person to confirm this!
I'm doing well now, yoga 3 times a week, 15 minute meditation every day and walking 40 minutes a day. That's my personal prescription.
Your reply interests me in that you say you are no longer on Calquence. I thought we could never get off it even if we achieved uMRD. Have I got that wrong?
Thanks so much for posting about your struggles with anxiety while taking Calquence. I’ve been searching for answered of why I’ve been struggling with anxiety so much. No one seems to understand including my wife. Like the other posts I’ve read in this chain, I contributed it to COVID or just insecurities. I never really struggled with it before CLL and taking Calquence. I’m curious to why there is nothing on the Calquence side-effects chart about possible depression or anxiety. I’ve been taking it for about a year now. Hopefully I can get some answers after my checkup at MD next month.
Hi Priceless, thank you for your response, there's been very few people that are reporting extreme anxiety. I will write you in more detail later today; I'm off to yoga right now. Susan
OK Priceless back at you with what I've experienced & know. I was given FCR as my first treatment; I didn't get hardly sick with common symptoms and got a 6 month remission. Then put on to Ibrutinib; very bad increasing anxiety for the year of treatment. I went to our local hospital pharmacist & the monograph on this drug says causes anxiety in 20% of those who take it. My oncologist didn't mention that and questioned me when I said that it's causing me rolling feelings of dread & anxiety by 4 pm afternoon. She was surprised when I said the pharmacist told me. She said I have been through a lot. So then on to Calquence treatment. Less anxiety for me on this drug, but still, depression, anxiety, dissociation. Every time I took a break from Calquence (dental surgery & colonoscopy for 2 weeks each procedure) my anxiety would lessen. I'm in remission as of last Nov when I stopped taking the drug. As of Jan this year I felt like my old self, mostly, and said to my husband, oh my god, I feel almost normal.
About me: I do have a generalized social anxiety disorder, I have an ADHD brain and I'm very sensitive to my environment. I took a course called DBTherapy ( Dialectical Behaviour Therapy) during all of this & it helped me. I also do yoga & meditate 15 mins a day; it all helps me. And coming to terms with shortened life span, a big one.
I think this family of drugs are very powerful & effective but cause very serious side effects. ( I kinda wondered when I was really depressed if that the cost of continued life makes you want to die, is it worth it?) I know these BTK inhibitors are newish to the market and the docs don't know all there is to know about them. (I saw a German documentary on Ibrutinib)
More needs to be explored; and commonly prescribed drugs can make one feel really crazy, not just the BTK inhibiters.
So I will look at the monograph for Calquence and report back to you.
All I can say is I really have compassion for you and how bad you are feeling. I've been there and I think there is relief, maybe cutting back on the dosage? Or stopping the drug if you are in remission? Kindly Susan Canning, from the westcoast of Canada
Thank you for opening up about your experiences. It's making me recognize that the medication and my CLL might be contributing to my anxiety and depression. I've also grappled with thoughts about whether life is worth it at times, which is new for me. Your sharing is reassuring because it helps me understand I'm not alone in this, and I believe that with faith in the Lord, I can overcome these challenges.
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