← Return to Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Discussion

Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (355)
Comment receiving replies
@mrgreentea

Hi @monicalu2626, my doc started me with Brukinsa (aka Z) last June. I think my WBCs were around 60,000 at the time. I was dx'd with CLL,WM, and SMZL stage 4... He recently suggested that **I** might consider a BCL2 or a CD20 antibody (like rituximab, though he mentioned obinutuzumab) to "deepen the response". I don't feel I have enough info yet to make that decision myself...I'll discuss it again at my next appt in March.

I was really sorry to read that you had such a bad experience with rituximab!! It feels like we all need to play russian roulette with drugs on this journey. Always hoping for the best.

Jump to this post

Replies to "Hi @monicalu2626, my doc started me with Brukinsa (aka Z) last June. I think my WBCs..."
monicalu2626 | @monicalu2626 | Feb 24 2:11pm

Hi @mrgreentea,
I’m sorry to hear you have so much going on. Have you obtained a second opinion?My labs have anomalies and crossover between different lymphomas. It’s crazy.
Rituximab appears to be a front line drug for small B cell lymphomas. Most people only have a reaction during their first infusion, if any. I’m going to stick with it. I just need to keep taking the pré-meds (most people don’t need them after the first treatment) and they will slow down the drip.
It is making a difference in my blood counts, and I’m suffering much less fatigue and bone pain. Yippee! Don’t be scared off by the reaction possibilities if you want to give it a try. It has been around for about twenty years.
Sending positive energy!

VIEW AND REPLY