Venetoclax and spleen enlarging

[Barbshow]

My husband is on an ibrutinib venetoclax combo trial. His spleen reduced after initial few months on ibrutinib but after 4 doses of Ven, it looks nearly as large as before treatment. Anyone on Ven experience something similar? Thank you.

[Justasheet1]

Barbshow,

Has his doctor noticed this?

Jeff

[Barbshow in reply to Justasheet1]

We don’t see doctor until Wed. He feels fine, but I want to be sure it’s not an indication of TLS. We’re at MDAnderson for ramp up.

[Justasheet1 in reply to Barbshow]

Well he’s in world class care.

Merry Christmas 🎁

Jeff

[Barbshow]

Thanks, Jeff. I wish you a Merry Christmas as well.

[Hoffy]

I am on same combo atUC San diego. I have not had this issue.

[Barbshow in reply to Hoffy]

Thanks, Hoffy. Doctor and PA checked him today. They couldn't feel his spleen. Seemed bigger to us, but maybe just his belly. 😉

[Hoffy in reply to Barbshow]

Great. I do get bloating a lot on Venetoclax and IB.

Bloating is a side effect of Venetoclax.

Be well.

[Barbshow in reply to Hoffy]

Interesting. Thanks, no one mentioned bloating, I don't think. Bet that's it.

[Ninagram]

My trial will be ibrutinib /venetoclax. Have been diagnosed since 2008. Last six months wbc increasing and platelets decreasing. Lots of fatigue and lymph nodes.

[Barbshow in reply to Ninagram]

Nina, I hope you do well on the combination. Where will you receive it and when do you start? Results have been great for so many! My husband is in the 3rd week of the Ven dose ramp up. He's doing well on the treatment with very few and very manageable minor side effects. He did develop gout this week, seemingly incidental to treatment and it didn't affect his dose escalation.

[Ninagram in reply to Barbshow]

Thanks for your words of encouragement. I am having my treatment in NC. I hopefully start end of Jan. Best wishes to you and your family

[profrich]

I am having the same experience, namely ALC going from 41000 to 10000 in 1 week but spleen going from barely noticeable (due to calquence) to more pronounced like it was before calquence.

How much time elapsed between when you noticed it was enlarged until you saw the doctor and he said it was not? I an wondering if it just went down in that time.

Thanks,

Rich

[Barbshow in reply to profrich]

Rich, I don’t recall how long before the spleen went down again since it happened last year. But he was being monitored pretty often at the time. It might have even been when he was still in the venetoclax ramp-up so he’d have been seen weekly. If not, it would have been probably no more than weeks. Hope you do well. My husband reached MRD neg after about 9 months and continues to do well. Wishing the same for you! When do you go back to a doctor?