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

Colleen
Hello , I completed the four rituximab treatments. The last one was Sept 13. As mentioned, the first was difficult but the other three went well and was just bit tired after each. I feel good and also just received the new covid booster. I have follow up appointments mid November. Thanks for checking.

Labs were done prior to the office visit
Repeat labs and follow-up office visit in 3 months - no treatment at this time
Also under care of radiologist specializing in amyloidosis

@stanleykent, were you able to resume treatment with rituximab? How are you doing?

@jam5, did you have a lab report or imaging study after meeting with your oncologist? When will you have a chance to discuss these results and know the treatment plan?

At this point seems to be NMZL; however when I asked about WM SMM the oncologist drew three interconnecting circle and indicated the commonality and shared elements.
Please clarify the meaning /significance of these terms:
MZL Mspike1.5
rare combination AL heart ( WATTR cardiac amyloidosis and AL smaller amount in myocardium confirmed by myocardium biopsies)
NGS: MYD88 NSD2 KMT2D TP53 +11q- 13q- and 19+4

cdwilm, I hope you have a postive oncologist visit on 9/20.
My infusion on Tuesday went very well. No reaction or body aches. Such a relief. The pre infusion blood test showed small movements in the correct direction. I can feel my spleen is a bit smaller and less sensitive. Two more to go.
All good except I'm concerned about having a weakened immune system and how to get out of the house a bit and interact with family, friends, public, etc.
Thanks for all the well wishes.

Stan, I’m hoping your Rituximab infusions are less traumatic and you are seeing your lab results go in the right direction. Eating healthy is super important. You have to treat your body like it’s a Ferrari and only give it the finest fuel. I see my oncologist for follow up on 9/20. Keep me informed on your progress.

Stan, I had a similar experience with my first Rituximab dose which they ended up doing over 2 days so they could slow down the drip rate. My second dose started out slow but was ramped up every 30 minutes with no reactions noted. By the 3rd infusion I was started at the normal drip rate and was fine for the 5 other infusions I received once a week. I was usually out of the office in 2.5-3 hours depending on if I had a doctor's appointment.
I hope you are feeling better and the Rituximab is doing it's targeted therapy work on your cancer cells.

I understand many folks have minimal difficulty with rituximab and/or infusions..... but not me. They administered the pre-medications, but when the rituximab started, I had reactions and it was stopped in 15 minutes. More meds were given, and a second attempt had similar results. More meds were given and eventually they were able to continue and after 8 hours it was completed. Pretty bad body aches through the entire time. I sure felt better shortly after it was completed as well as the past couple days. The second infusion is supposed to be easier, so am looking forward to a better day on Tuesday.

Hi Stan,
I hope the Rituximab infusions will take you back to a better health status.
I recently had Covid and was given the Paxlovid to assist with my recovery. After a month I'm finally feeling as if I'm back to my normal energy level.
I will be thinking of you on the 23rd and hoping all goes well with your infusion.