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

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.

@andilynn I take 2 pills 2x/day w/water. I also drink about 64oz during the day, which can help reduce stress on the kidneys. No reactions. I am curious if your docs have offered any reasons for your response to it. I know other folks have reacted to Z...you might seek them out & see if they have found any solutions (maybe, even as simple as taking it with food). I am also on the CLL community at healthunlocked.com - that would be another place to ask. If Z doesn't work out you can always ask your doc about one of the newer treatment options... Take Care.

Hi everyone, I’m hoping you can please share about pain? After each of my four initial Rituximab infusions I experienced burning bone and nerve pain in my legs. Because my bone marrow is quite involved, I expected some pain, but not to the extent that it wakes me up.
Have you had this type of pain? If so, what helped?

Also- I’m wondering if anyone experienced the infusion reaction rigors? Was it just during your first treatment? Or were you blessed to have no allergic reaction?

Thank you in advance for sharing!

Hi Mrgreentea,

It’s good to hear that you’re doing well on Brukinsa. May I ask what your dosage is? My first oncologist had me on 4 pills a day. That was too much for me. I switched oncologists and now I’m on one a day. We’ll reevaluate in a couple months to see if it’s working, or if we need to increase the dosage. I’ve been getting subcutaneous immunoglobulins for over a year. It’s done at a hospital, by wonderful nurses, every four weeks.
I wish you all luck on your health journey.

It is interesting… the different treatments that our docs are saying are first line…
Nothing but Rituximab was suggested for my first four treatments. I’ll know what’s next after my March 6 scans/labs.
Has your treatment been successful so far? Did you have any side effects?
I hope you are feeling ok.

I was treated on January 2023
with Bedamustine and Rituxin with a patch for 24 hours to stimulate my wbc. I had this 3 day treatment until June 2023. It was stage 4 in my bone marrow. I'm just curious that everyone else had 4 treatments of Rituxin. Not Bedamustine.

Hi, thanks for sharing! I’m wondering if you did Rituximab maintenance, or are you doing Brukinsa instead? TIA

Hi @andilynn - one comment - I heard that some ppl give themselves subcutaneous IgG shots every week or two. They mention 2 benefits - they can do it at home, and it evens out the IgG over the month. This is what I will try to get when they say I can get IgG. It's too bad that IgA replacement therapies don't exist yet (I have low IgA). I did see that there is research going on in this area, so fingers crossed. Finally, I'm on Brukinsa 8 months so far, no issues yet.

I’m sorry you are dealing with this. I’m learning about the immunoglobulin “world” which has never been on my bucket list. I’m not sure if 2 years of Rituximab infusions maintenance would be good for me, mainly because of the scary reactions I’ve had, but also because of information like you are sharing. Please let me know how you do with the Brukinsa? My doc has mentioned it.
Sending energy for a good outcome!

Hi Monica,
I didn’t want to do Rituxan again, because I believe it has caused me chronic problems. My immunity never recovered and I now must get immunoglobulin infusions every four weeks. That only helps with IgG. I have low IgM and no IgA. I believe the lack of IgA has resulted in chronic digestive problems…lactose and fructose intolerance especially.
So, I opted to try Brukinsa. It’s too early yet to tell if it will work for me. I like the ease of taking a pill at home.