VENOTOCLAX +: Because of afib due to Ibrutinib... - CLL Support

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VENOTOCLAX +

unairdefamille profile image
11 Replies

Because of afib due to Ibrutinib and Acalabrutinib and visits in ER, my oncologist is thinking of a combo of Venotoclax paired with another med. Is anyone here on this treatment?

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unairdefamille profile image
unairdefamille
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11 Replies
Pacificview profile image
Pacificview

Hi, I am currently on OBINUTUZUMAB/VENETOCLAX regimen.I started on 3/23/23 and it is very effective. All palpable lymph nodes gone, spleen almost normal, bloods close to normal. Not without side effects getting there, but manageable. Nothing that would send me to the ER. Heart issues what so ever.

LeoPa profile image
LeoPa

You forgot to lock your post. I have read about many members being on V + O and V+R.

unairdefamille profile image
unairdefamille in reply to LeoPa

I don't know how to lock my post 🤔 Can you tell me how, please!

LeoPa profile image
LeoPa in reply to unairdefamille

Before you submit a post you can select who will see it, everyone or community only. Select community only. If you edit your post you can change this selection. Look for edit button under your post. I think it should be community only by default. And if someone wants to opt for everyone to see it he could do so actively by changing the default setting.

Wendy328 profile image
Wendy328

I started on Venetaclax on 3/31/23 then moved to Obinutuzumab. A couple of minor blips ramping up the venetaclax, resolved by slowing down then resuming. I had my first round of Obinutuzumab 6/8 & 6/9 some mild body soreness two days later , but managed. Second round will be 6/15 up to 1,000 mg while taking 400 mg Venetaclax. Labs look good, lymph nodes gone!

unairdefamille profile image
unairdefamille

Thank you, Wendy! How things go on improving. Did you have to be hospotalized in the beginning??

LeoPa profile image
LeoPa in reply to unairdefamille

Check the posts of @Poodle2, she wrote extensively about her experience with the combo.

healthunlocked.com/cllsuppo...

Wendy328 profile image
Wendy328 in reply to unairdefamille

I did twice to monitor and receive fluids. Each time a 3 days stay.

Thundercat2 profile image
Thundercat2

I started treatment with Ibrutinib but had Afib episodes twice from it (I also had had Afib before though too). My second treatment consisted of Venetoclax and Obinutuzumab. Leading up to the ramp up on Venetoclax seemed very daunting and it does take time and possible trips to the hospital, but it's worth it! I stopped the V in February this year and was MRD- which means I am in a deep remission. I had a few GI issues with the V but much less side effects than the Ibrutinib. Everyone is different but I am very pleased with the results I received from this treatment. Good luck in finding the best option for you.

unairdefamille profile image
unairdefamille in reply to Thundercat2

THANK YOU Thundercat2. That sounds so hopeful. I celebrate with you the MDR and wish you the best from there onwards 🌟🌼💚

Big_Dee profile image
Big_Dee

Hello unairdefamille

I have been on V&O since Sept 2022 and have not been in hospital for anything. I would caution about first treatment with Obinutuzumab. The rest of my Obinutuzumab treatments were uneventful. I have been having diarrhea and nausea about once or twice a week on 400 mg of Venetoclax but I am working on methods to eliminate issues with H/O help.