Obinatuz & Venetoclax: started Obinatuzamed... - CLL Support

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Obinatuz & Venetoclax

Nbk59ct profile image
6 Replies

started Obinatuzamed infusions in June, added Venetoclax in July, and now at 400mg of Venetoclax. Noticeable side effects now that I’m on 400mg such as nausea multiple times a day and a tightness/bloated and distended feeling in abdomen. I understand this is common but curious about others experience and remedies….

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Nbk59ct profile image
Nbk59ct
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AussieNeil profile image
AussieNeilPartnerAdministrator

Two possible options that you can try separately or together, are asking for antinausea medications - there are a number of different drugs you can try, as what works is individual, or see if shifting taking your venetoclax to just before you go to sleep helps. If you opt for the latter, just shift when you take your venetoclax in under 4 hour steps to stay within the missed dose window.

Some find ginger helps, but it's not uncommon to find that something stronger is needed. If you regularly experience nausea, it's very important to stay on the antinausea meds, so your body is in readiness to tolerate the venetoclax. It can be very difficult to get relief after nausea hits.

Don't be surprised if it takes a few months after you finish treatment for your digestion to return to normal.

Neil

Poodle2 profile image
Poodle2

It helped me to take it just before bed time. Tried morning, after dinner and ended up taking it around 11pm. It didn't help 100% but there was an improvement. Just like Neil said, I continued having stomach related issues for another 4-5 months after I stopped the drugs. I also stopped eating spicy food (which I love) as it seemed to make things worse while on V. All the best.

bonbeat profile image
bonbeat

I take my venetoclax with my evening meal. I had read it was best to take it with food, at least 350 calories and some fat. I always take an anti nausea pill before hand (a zofran). If I still get nauseous after, then I take my other after anti nausea pill compazine and go to bed. This has worked best for me. I occasionally wake up with vomiting in the middle of the night but for me this is better than being sick all day. I usually feel better by the am. If I take my venetoclax without enough food the nausea is guaranteed even with the zofran. Change things around and see what works best for you. After all you will be on it for a while. Good luck. I'm almost completed.

Mijoed profile image
Mijoed

I guess we’re all different. I’m usually up at 05:00 so take my "two hour after food" pills with 0.5 litre of water. I then go out and walk the dog for two hours and usually buy a coffee on the way.

Back home, I prepare the dog food (raw) and share a banana with her. Then venetoclax with another 0.5 litre of water, a bowl of porridge and cup of tea or two.

I’ve never felt sick.

Big_Dee profile image
Big_Dee

Hello Nbk59ct

I am 9 months post V&O treatment. I had 2-4 bouts a week with nausea, diarrhea and vomiting during treatment. I was given anti-nausea and OTC anti-diarrhea meds which helped. I am happy to report that nausea, diarrhea and vomiting have reduced somewhat now that I have finished treatment. Blessings.

WittyApricot profile image
WittyApricot

I had horrible nausea--by the end of my treatment I was vomiting 3-5 nights a week. I had stomach stuff 24/7 when I started it. I took three meds for acid reflux and anti-nausea meds that I tended to vomit up 15 minutes after taking.

I have been off V since May, but still haven't fully regulated my acid reflux yet, but I am hopeful--the longer I am off the more my system will adjust. I use peppermint tea with at least two meals a day to help with digestion and it seems to help along with chewing some ginger.

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