sleep Issues with obinutuzamab?: I have had... - CLL Support

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sleep Issues with obinutuzamab?

Nbk59ct profile image
7 Replies

I have had 2 infusions to date and after a rough reaction during first one the second one went well and body is reacting well. However, after second one my sleep has been off, I’m not sleeping as I did prior to treatment. Curious if anyone else has experienced similar?

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Nbk59ct profile image
Nbk59ct
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7 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Nbk59ct,

Does the problem fade over a few days?

Your pretreatment for each infusion may include a steroid, and that can jazz you up, so sleep is difficult.

If you wish, and you have uneventful future infusions of Obin, you might ask your medical team if you can skip the steroid, and see if everything improves.

Len

Paulhonda profile image
Paulhonda in reply to lankisterguy

Yes, with me it was the Dex steroid. I would be awake all night with eyes about as wide as a dinner plate. I looked up the Obinutuzumab protocol and found that the steroid was optional after the first couple of infusions so after that I refused to have it. Slept well after that😀.

PennyLane2024 profile image
PennyLane2024

I just prepare myself not to sleep the night after an infusion. I pick out some good movies to watch from midnight to 4 am.

I workout every day and take Venetoclax and a trazadone an hour before bed. I am sleeping better now than I gave in past ten years.

Things get much easier when Ob infusions are monthly instead of weekly. The first month is very hard physically and mentally

Poodle2 profile image
Poodle2

I think Len might be right, it might be the steroids they give you before the infusion. They might stop them soon. Just sleep during the day, if you can. Watch movies or read at night?

sidesy profile image
sidesy

Hello there , sorry to read about the sleep issues but I'm due to start ibru in mid August (weekly for 3 months, fortnightly for 3 etc...) When you say "rough" how did it affect you please ? I know we all react differently but I'd be interested and anything you may have found to help ? Hope you're feeling better soon , Gary 🙏

Big_Dee profile image
Big_Dee

Hello Nbk59ct

By the time I was on 4th-5th Oblin infusion, I could sleep right through the infusion. I had same issue with premeds to start, but am retired, so easy for me to take a nap. 😁

Sewster profile image
Sewster

Yes - same for me. I also requested NO steroid for pre-treatment before Obinutuzumab infusion. However, I still had insomnia. I worked hard on my sleep hygiene, doing all the “right” things to no avail. Just watched Netflix, Acorn, etc. Not really a problem, since I am retired….

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