Ibrutinib: Diagnosed 2017 with higher WBC and... - CLL Support

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Ibrutinib

jcbindy profile image
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Diagnosed 2017 with higher WBC and lower platelet counts just outside of the normal range; had a bone marrow biopsy before Christmas 2019; started Ibrutinib 420 mg on January 3rd 2020; saw my oncologist on the 16th after blood tests the day before. WBC went down from 35K to 29K in roughly 2 weeks from starting the Ibrutinib. My oncologist wants to see me every 2 weeks with blood tests prior to seeing him. I take Ibrutinib just before going to bed along with 10 mg atorvastatin and supplements. I wake up wide awake after 2-3 hours every night with nothing on my mind and not hot or cold (which took place even before I started the Ibrutinib) with dry mouth. I can't drink enough water day and night. I need to check with the doc what I can take to eliminate the dry mouth and hopefully get better sleep. Sleeping pills are worthless and make matters worse. Falling asleep is not the problem, staying asleep is the problem. If I am fortunate once in a great while, I may get 4-5 hours. That is consistent. As far as the CLL goes, I am hoping that my 2-week visits to the doc will be favorable.

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jcbindy
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Newdawn profile image
NewdawnAdministrator

Maybe it would help your sleep pattern to take the Ibrutinib in the morning. That’s when I take them and it allows plenty of time for hydration after they’re taken.

Best wishes,

Newdawn

i take ibrutinib in morning

cajunjeff profile image
cajunjeff

I take my ibrutinib in the morning as well because I dont want to drink a lot of water before I go to bed. It sounds like your insomnia predates your ibrutinib use though, so I am not sure if that is the problem. It cannot hurt to switch times and see.

If it is your dry mouth that is waking you up maybe a moisturizing mouthwash at night would help. Alcohol based products increase dryness. Biotin has a mouthwash formula specifically for dry mouth. You can try rinsing with it before bedtime and when you wake up at night.

biotene.com/dry-mouth-produ...

Here are some natural insomnia tips. One thing I found that works for me that is not on many lists is that I will not toss and turn for over fifteen minutes. If I cant go back to sleep in ten or fifteen minutes, I stop fighting it and just get up. If I go sit in a chair and read for a bit and take my mind off not sleeping, I tend to drift off in a half hour or so. Staying in bed and worrying about not sleeping just keeps me up more, if that makes any sense.

everydayhealth.com/sleep-pi...

Sushibruno profile image
Sushibruno in reply tocajunjeff

That's makes so much sense, I'm not on ibrutinib but i have had trouble falling sleep, fighting it didn't help i was so frustrated. So i didn't fight it anymore i went with the flow I fell asleep when it happened.

dmmck profile image
dmmck

I also take ibrutinib at night. I use xylimelts for dry mouth. You tuck them in your mouth and they adhere to your gums. They last several hours. I order them from amazon, but they are available at many pharmacies. I also keep biotene dry mouth spray by my bed. If I wake up with dry mouth, a couple of sprays help. I hope you find something that works for you.

12Caine12 profile image
12Caine12

I've been on Ib for a month now and I too get more thirsty, thus drinking more water.

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