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

@monicalu2626 Thank you - I feel quite fortunate actually. I realize that it could be so much worse. Regarding 2nd opinions, I had a few docs at Mayo trying to figure things out. Since I had several issues it took some time (5 months) to determine what was going on. The cancer doc I started with, before I decided to reach out to Mayo, also struggled.

What I wonder is, if it ain't broke why try to fix it? I'm OK with where I am now on Z. It's just unclear in what way Ritux or Obin will improve my situation, and if there are any downsides.

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!

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.