Feel like a Zombie: Has anyone experienced... - CLL Support

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Feel like a Zombie

pwebster profile image
16 Replies

Has anyone experienced severe bouts of insomnia and anxiety once the started on Imbruvica? I've been on it almost 3 weeks and have only slept 3-4 days and then have horrible anxiety that I won't be able to stabilize my life again. If discussed it with my PA and she suggested I might need to see a therapist about it,

I welcome any insight.

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pwebster profile image
pwebster
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16 Replies
Cindy1462 profile image
Cindy1462

Are you taking any steroids? I have been prescribed them to help with FCR nausea and they stop me sleeping all night. You might need to practice some meditation and breathing techniques. Hope this phase passes for you soon.

pwebster profile image
pwebster in reply toCindy1462

Cindy, thank you. No steroids. I'll look into the meditation and breathing techniques. Any place you think I should look?

Cindy1462 profile image
Cindy1462 in reply topwebster

Hiya. I have downloaded an app on my phone called “calm” that I find relaxing. It teaches you breathing techniques. Worth a shot. Hope you find something to help.

pilantd profile image
pilantd

I started IB on April 2, 2017. Initially I felt fatigued and didn't rest well or feel well rested during the day. Many of the initial side-effects went away. However, I still have trouble staying asleep after falling asleep and I'm not getting deep sleep I'm accustomed to.

Que-sera-sera profile image
Que-sera-sera

Pwebster....You're pretty much describing me when I started on Ibrutinib except maybe I slept a little more than you but only because ("just between us"), I took over counter sleep aids here n there, but I know that's not what people should do. I still had zero energy though and could only lay around and think of taking naps during the day. However, I'm here to tell you (and you will hear from plenty others) that it does get a lot better! I mean, just by virtue of your "numbers" getting better, you will have more energy to do things and your outlook will improve.

Yes, I was also most likely experiencing some level of depression but even that has improved, because, I know it will sound crazy, but I've come to see my situation as a blessing! And I say that because I'm coming from the standpoint that things could be waaay worse, so it makes me more grateful for every day that I can wake up, be out and about and remain mobile and independent!

So, I choose to focus on that, rather than the "why me" that most of us go thru initially and so I think all the above combined is helping things a lot and I know you will experience a big difference soon.

Best Regards.

pwebster profile image
pwebster in reply toQue-sera-sera

Thank you, I can't tell you how much your reply helped ! In reality , I've been through worse things in my life and as you point out, I should be focusing on the "blessing" aspect of this experience .

Thanks again.

Que-sera-sera profile image
Que-sera-sera in reply topwebster

Very happy to hear that!

To be honest when I was writing, I almost did not recognize myself because prior to this, I have not been the "Isn't life great?!" type of person and yet, perhaps even for that very same reason and from knowing that there's so much illness and suffering, it has made me stop and realize I'm doing pretty darn well! And so I honest-to- Goodness, do give Thanks for that!

RJR1 profile image
RJR1

So for me the opposite. 18 months in and until very recently I was sleeping 8 hours straight... now I'm waking up after about 5 hours and then sleep in short bursts for another couple hours. Go figure

pwebster profile image
pwebster

Thanks!

LynnB1947 profile image
LynnB1947

I'm not sure what time of day you are taking your ibrutinib. I was taking it about 9 PM or about an hour before I went to sleep. I found myself waking up at 2 PM & unable to go back to sleep. After about 3 years on IBR, I started taking it in the morning when I get up instead of taking it at night. Now I sleep better. If I'm really worked up about something, I take a Benadryl at bedtime & then I sleep really good.

Sweet dreams ..

LynnB

Farrpottery profile image
Farrpottery in reply toLynnB1947

How many years have you been on Ibrutinib?

So glad to hear this.

Farrpottery

LynnB1947 profile image
LynnB1947 in reply toFarrpottery

It's be 4 years in April 2018. So far, so good.

Gambopond profile image
Gambopond in reply toLynnB1947

Thank you for sharing your experience about changing the time of day for taking Ibrutinib. I am now finishing my sixth month on the drug and continually sleeping at night has been problematic. I now intend to change my three pill routein to morning and am hopeful that sleep patterns will improve. Am now dealing with my fourth primary cancer treatment, am 84 years old and have learned to accept the fact that my golf handicap has increased but I anticipate some improvement if I have a good nights rest. We are all so fortunate to have experience the increditable improvements in medical technology. Gambo

LynnB1947 profile image
LynnB1947 in reply toGambopond

Gambopond ... Wishing you the best

Farrpottery profile image
Farrpottery

My husband was diagnosed in 2013. He had a 6 month chemo then. This year he had 3 months of FCR failed. Now. Doing really good on Ibrutinib.

Blessings for you to continue the journey in good health.

Farrpottery

BCTexas profile image
BCTexas

I felt the same as you. My PA said the same thing. It will pass. This post is a month old so hopefully you are doing better. I started feeling better after several weeks.

BC

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