Hi everybody. I’ve been on 400mg venetoclax for two months but just started to get really tired in the afternoon. Also diarrhea. When I went for treatment this week they told me I was neutropenic and the consultant has put me back down to 300mg venetoclax daily. Has anyone else experience of this? I thought once I’d passed the ramp up stage it was going to be plain sailing?
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Hi @ELGall1996
Sorry to hear about your challenges with Venetoclax and feeling tired in the afternoon.
I was on Venetoclax for about 10 months and was neutropenic for most of that time if memory serves me correctly.
Food you eat is important and I on advice of my clinical team avoided having salads that weren’t made by wife.
If eating out or having a takeaway important that the establishment has a good hygiene rating.
I tended to avoid eating out or takeaway food. Odd cappuccino was about as far as I went.
It’s not uncommon as I understand it for medication doses to be adjusted depending on patient response.
Hope that helps and take care
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Thanks for your reply. Yes, I think I’m going to be extra careful with food. I’m not a takeaway person anyway!
I’ll keep an eye on things.
Kind regards
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Hi @ELGall1996, sorry to hear treatment hasn’t been quite the smooth ride you were hoping for after the ramp-up. I’m glad @DuncanB is able to provide you with some experienced insight.
It sounds like your team are doing the right thing in responding to what your bloods are showing, and dose adjustments like this are something our nurses on the Support Line can talk through with you if it would help to understand more about what’s happening - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
In the meantime, you might find it helpful to have a look at this recent thread from another member asking about fatigue on venetoclax - some good experiences shared there and some advice from our blood cancer nurse @GemmaBloodCancerUK. We also have some information on managing fatigue that might be useful.
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you for your reply. Any advice and support is very welcome. It’s reassuring to know that others have has the same side effects etc.
Kind regards.
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