first week of obintuzinab : I’ve just had my... - CLL Support

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first week of obintuzinab

DogmomLM profile image
9 Replies

I’ve just had my first two days of O. Numbers are dramatically better! But man, I can’t stop taking naps today. I think I’m supposed to stay very active, but this sleep feels so good. Maybe excessive? I had infusions on Tuesday and yesterday. Have you had a similar experience? Thank you.

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DogmomLM profile image
DogmomLM
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9 Replies
Mina2021 profile image
Mina2021

Dogmom, I don’t know 🤷‍♂️ anything I’m still in watch and worry. Doesn’t sound bad as I can’t sleep 💤 few hours then waking not able to fall back asleep 😴:(

SofiaDeo profile image
SofiaDeo

Why do you think you are supposed to stay active? You are having a medical procedure, and it is killing off lots of CLL cells that you need to metabolize & eliminate. That takes energy. It's nicer to be "hospitalized at home" IMO if one is tired & just wants to rest.

If your body is saying "sleep", go ahead and sleep. If you feel like doing things, that's fine too. Some of us get tired during treatments, some don't. There's no "correct" answer. Other than to listen to your body signals!

DogmomLM profile image
DogmomLM in reply toSofiaDeo

Thank you!

LeoPa profile image
LeoPa

Why would you need to stay very active? Sleep all you want. You can be active in between 😀

Poodle2 profile image
Poodle2

I agree with SofiaDeo ! Your body is working extremely hard now it has the drugs running through your veins! Be kind to yourself. I was always very tired after the infusions, for about two days. It got better over time, when I was on cycle 4, I didn't feel as exhausted as during the first few cycles, maybe as there were less cells to kill off, less work for my kidneys, etc.? Not sure but I know I always planned a quiet day on the sofa, book or telly for the day or two after an infusion.

Dutchie-1963 profile image
Dutchie-1963

Oh my dear, be nice for yourself. I'm in cycle 3. And still needs approx 2 naps a day. Your body is processing a lot. After a shot of obi, i need three days of rest.

Results are good and it takes tons of energy. Take care!

bonbeat profile image
bonbeat

I stayed in bed and slept for a week after my first 2 O infusions. Rest and monitor your temperature for fever. Call your doctor ASAP if you have a temperature.

Bajabarb profile image
Bajabarb

I had the same experience after the first few infusions. But I think mine was more related to the dose of Benedryl that is given prior to the infusion to counteract any possible allergic reaction. By the 3rd or 4th infusion, I was able to persuade the nurses to reduce the dosage and eventually replace Benedryl with Claritin. Seems to have helped a lot!

SofiaDeo profile image
SofiaDeo in reply toBajabarb

Oooo true, and if one is sleepy from Benadryl, one definitely shouldn't be trying to do a lot, especially anything where you can cause injury. This isn't just "tired", it's drug induced drowsiness!

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