Anxiety and Sleep Problems having recently started Caquence

[Challis12]

I am wondering if others have experienced increased anxiety while on Calquence. I also struggle with sleep. I have been on he drug for approximately 2 and half months. The horrible side effect headaches have subsided but my anxiety has really been more challenging as has my sleep. I can’t find any thing about these issues in the listed side effects. Has anyone experienced these problems while taking the drug? Appreciate any thoughts!

[Spark_Plug]

Is the anxiety centered on the medical part or is it more generalized? That may inform you of a direction you could take in sorting this out. Does it happen around a particular set of circumstances? Time of day, place at work, group or person you're around, try keeping a very brief journal for two weeks and see if it fits a pattern. Sometimes, we can slowly unravel what is triggering these episodes it may be simpler than you imagine.

[Challis12 in reply to Spark_Plug]

Thank you! So I have generalized anxiety and have had sleep issues for a while. I do meditation, talk with a therapist, also take medication for anxiety. I would say I have reached the ability to manage rather well. The CLL is certainly another ball to add in the mix. Since coming out of remission and starting treatment approximately 2 months ago I can’t help but wonder if the meds……..Calquence and the infusions are stirring up the anxiety and sleep issues. I was doing ok, and now feel like I am struggling. I am not afraid of the CLL though it saddens me with what it has done to my physical appearance, However, I am so grateful it is working. Thank you for your journal suggestion. I will definitely start charting to look for a pattern.

I really appreciate you reaching out.

[Mogal in reply to Challis12]

I too have been on Zanubrutinib for over 2 years and have increasing anxiety. I too have been wondering if it is from the medication or just yet one more indication of getting older (82 years old ). The only things that seem to help are half tablets of lorazepam in the morning and various kinds of non caffeine teas. My oncologist does not seem to think the Zanubrutinib is the cause.

[Spark_Plug in reply to Challis12]

As it seems to gravitate toward the medical end, I can think of two ideas. (1) Talk with a Clinical Pharmacist they may have some insights that a community pharmacist wouldn't. They are more about specific patients they are part of hospital heath care teams. You may be able to get a brief consult arranged. (2) Perhaps pause with your regular therapist and see if they or again your oncologist can get you an appointment with an therapist that is experienced with oncology patients.

It isn't that your regular go to team is unqualified, yet you both can build such a good rapport that they may extend themselves into territories that another may be a little better at helping you. Also, it could be triggering the Generalized Anxiety Disorder (GAD) trend.

Just a thought, regardless, you're doing the right thing by not letting it get out of control.

[Nucleusman]

have been on Calquence about 2 1/2 years - it works but now have severe insomnia- hope it is just a phase

[Challis12]

So sorry to hear others are facing the same issues of increased sleep and anxiety. My doctor doesn’t believe it is the medication either, but from reading posts from others I can’t help but feel for some the medication does have an impact on anxiety and sleep. I have been taking a low dose of Temazepam which helped but since starting the medication it is not providing the relief it once did. I do have the Calm app and Breathe app I use for meditation. Those do help to quiet my mind at night.

[CycleWonder]

I have had anxiety issues that has affected my sleep prior to my diagnosis. It affects me less now since I adopted a new approach to going to bed - not using electronic devices for the last hour I’m up, writing down what I’m grateful for and what I’m worried about. I keep the lights low as I get ready for bed. I follow a routine which helps.

But sometimes the anxiety still sneaks in. I have four kids plus bonus kids and a grandchild. There’s usually someone that has a crisis going on.

My anxiety is not due to the treatment I’m on (Pirtobrutinib) but I feel much better if I sleep well.

One thing I’ve noticed is that sometimes I wake up and don’t realized I’ve been asleep. It happened last night. I woke up at 2 am and was restless. I felt defeated that I had been trying to sleep and here it was 2 am and I was still awake. In the middle of the night, my logic is a little fuzzy. If I had recognized I had been asleep, I could have laughed about it and gone back to sleep.

Tonight I will sleep well for sure!

[Rando21]

might be worth trying magnesium & L- theanine if the doctor says it’s ok. Both help with sleep. I use magnesium glycinate & L-theanine currently but this is unrelated to treatment.

[Challis12 in reply to Rando21]

Thanks. I actually just bought magnesium glycinate as I read it helps with anxiety. Will try the L-theanine. How much do you take of each?

[Rando21 in reply to Challis12]

I take about 200 mg of each.

I’ve been experimenting trying to avoid the potential blood sugar crash that triggers waking up late night. I may have had some success with a tiny quantity of raisins. The thinking being they take time to digest and I’m taking like 5 just trying to avoid being woken up. I dunno if that relates to your sleep issue as well. This video might be somewhat helpful, it’s not like a source I trust I just quickly looked for some resource, but she does discuss the blood sugar issue at one point.

youtu.be/AN3tp8q-DXo?si=-wP...(Not working as expected?)