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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: Nov 15 7:18pm | Replies (329)Comment receiving replies
Hi @lila1. Welcome to Connect. You came to the right place to be able to chat with others who share your diagnosis of Splenic B cell Marginal Zone Lymphoma.
I see you’re in the watch and wait phase which can often feel like you’re waiting for the other shoe to drop. So I hope you’re not letting that interfere with just enjoying life to the fullest. Those pesky “what ifs” can be such stressors.
From reading your other replies, it looks as though your doctor has given you potential treatment options of infusions with Rituxan or a splenectomy? Is there a reason you’d prefer the surgery instead of infusions? Rituxan can be a pretty effective medication especially where B-cells are concerned.
How long ago were you diagnosed?
Replies to "Hi @lila1. Welcome to Connect. You came to the right place to be able to chat..."
Diagnosed May 2024. Got 3 opinions, read research. Splenectomy has pros/cons, as does rituximab. They all seem to result in similar OS and PFS. In my estimation it appears a toss up, a personal choice. Would you prefer to have infusions that affect your immune system one way or surgery that affects your immune system another way? Clearly oncologists tout rituxan over OG surgery. But if you are on the young side with low marrow involvement, why would you choose rituxan over surgery? Please freely share advice!
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@lila1
Hi Lila,
I have SMZL (and WM and CLL) and just started treatment (after being diagnosed 6 months ago). Personally, if I had been given the choice of surgery or chemo, I would have opted for the latter rather than have to deal without a spleen for the rest of my life.
During those 6 months I did a lot of research (but I am a mere novice compared to Lori!). A good research paper on SMZL, if you are interested in light reading 😉 :
- Optimal Rituximab Monotherapy in Splenic Marginal Zone Lymphoma (SMZL): A Case Report and Brief Review
Conclusion: Rituximab monotherapy has favorable therapeutic effects and minor adverse effects (AEs) in treating SMZL
https://pubmed.ncbi.nlm.nih.gov/37937574/
Perhaps because of my triple condition my Mayo team recommended a BTK inhibitor (Zanubrutinib). BTKs are an entirely different deep rabbit hole to go down... but very interesting if you like biochemistry.
I hope this helps!
Paul