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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: 6 days ago | Replies (329)Comment receiving replies
I was diagnosed in Nov 2019 with the startling discovery of NHL, B Cell in my spleen. My spleen had grown to twice its normal size and I received 4 rounds of Rituxan in January 2022 and my numbers have come down. My next scheduled follow up is next week & prayers that it is still reducing. (However I feel part of my stomach is growing again). Any current posts or updates on this? Thanks
Replies to "I was diagnosed in Nov 2019 with the startling discovery of NHL, B Cell in my..."
Hello Sally! It’s so important to be able to talk with others about SMZL especially since it’s fairly rare.
My spleen is holding to its size at diagnosis and I cannot help much with drug regimens or surgical questions, but I think it’s important for our community to stick together!
I can hear the concern in your message. It took me some time to come to grips with the fact that I have a cancer - often referring to my doctor as my hematologist, not oncologist. Eventually I got over that 😉
My newest issue is watching my IGG proteins and after bloodwork in July may get an infusion to boost those #s to better support my immune system.
Write any time you want to chat. Wishing you well and hoping for encouraging news for you!!
Laurie
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Welcome, Sally. Yes, we have quite a group of members talking about splenic marginal zone lymphoma (SMZL) also called Splenic B cell Marginal Zone Lymphoma. I moved your post to this active discussion thread in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/)
- Want to connect with others with Splenic B cell Marginal Zone Lymphoma https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/
I did this so you can connect easily with @scsimpson @theresad2 @caroldk @waltera @kayak4me @reneemp @stanleykent @cdwilm27 and others who have experience with enlarged slpeen, Rituxan and living with this cancer.
Sally, waiting for your next follow-up is hard. I join you in hoping that the numbers are still on the downward trend. When was your last Rituxan treatment? What makes you feel like your stomach is growing again?