Very tired

[farber]

Hello, I’m taking Imbruvica for 2 years, my numbers is excellent, but I feel very tired. In the morning I have energy, but afternoon is gone.

[lorna222]

Hi Garber sorry to hear you're having such a hard time with imbruvica. I'll share my experience maybe it'll help? I have been on imbruvica for a 14 months well seeing one doctor and the longer I was on it for worse my side effects seem to get, including tons of fatigue. So the other side effects include foggy confused brain, not really being able to eat at times and just feeling generally terrible. I have now returned to my oncologist I was seeing two years ago and I am looking at fcr treatment which he seems to think I am a much better match for. Even though I would tell my doctor about the fatigue he would really just sort of minimize it which is all fine and well for him mean while I found it hard to get through the day. Napping everyday was a must.

They want to share your symptoms with your doctor if you haven't already and see if there's something they can do about it treatment wise. I know all of us are different well some people struggle with a certain type of treatments other people don't seem to be bothered by it at all go figure. Good luck hang in there. Lorna

[farber in reply to lorna222]

Thank you for sharing your experience

[AdrianUK in reply to lorna222]

Mmm not sure it is very usual to go from ibrutinib to FCR. Have you discussed venetoclax? Also you mention an oncologist. I would strongly suggest a referral to a true CLL specialist to discuss all the options available to you before starting a second treatment. This might include clinical trials. Oncologists are not as up to date as CLL experts in CLL. You can if you are in the USA get a free consult over the web if you can’t get insurance funding.

[Purple_lady9999]

I had terrible side effects from ibrutinib with severe fatigue and brain fog so I stopped taking it. I was restarted on it in the hospital at Penn but had no side effects. It seems that for me the time of day I took it mattered a lot - taking it in the morning instead of at night stopped the side effects. I had to stop taking it for a short time because of neutropenia and when I restarted it I took it at night and the side effects came right back. I don't know if changing the time of day will help you, but it helped me.

[farber in reply to Purple_lady9999]

Thank you, will speak with my doctor

[BluMts in reply to Purple_lady9999]

Did you take it with the same type of meal in morning as you did at night. I find your comment fascinating and would appreciate any further background info a out the two different times of taking.

[Purple_lady9999 in reply to BluMts]

When I was taking it at night I took it at bedtime so the most I would have had to eat was ice cream. In the morning I take it just before I have a bowl of cereal with about half a cup of cereal and 1.5 cups of milk. It's usually a paleo cereal that's mostly nuts and seeds.

It's crazy the difference it made. But I am usually weird. 😉

[farber in reply to Purple_lady9999]

I never noticed that my food( breakfast) interfered with Imbruvica. Usually in the morning have oatmeal, than take Imbruvica

[BluMts in reply to farber]

Faber, seemed to me that Purple Lady is not saying that taking her IB with breakfast interfered with IB.

[BluMts in reply to Purple_lady9999]

Thanks for the info. Purple Lady. If I was you I'd consider whether changing to taking the IB with breakfast which is more substantial in many respects than your night snack, helped cut back on your side effects. Sad thing is that there seems to be no info out there, or even discussion of this.

For what it's worth, it seems to me that taking the IB with the first mouthfuls of a large balanced meal makes the IB more digestible than taking with little food or even after eating. I've learnt to go with my gut feelings. 😁 😁 😁

[Purple_lady9999 in reply to BluMts]

Ice cream can be pretty substantial if you eat enough of it! 🍨

[Deta1961]

I feel just like you, i’m on ibrutinib for almost 2 years!

[opal11uk]

I always read the instructions on all medication and note time of day and whether with or without food because it can affect you which way around you take it

[duffymcgrif]

Have your thyroid checked. Mine was way off. But even if it isn't your thyroid, it is one of the side affects of Imbruvica. I've found, like most side affects, it will go away in time. Just stay positive and rest when you needed. Hopefully it will pass soon. Good Luck and don't give up.

[farber in reply to duffymcgrif]

Thank you for advice