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Does anyone have splenic marginal zone lymphoma?
Blood Cancers & Disorders | Last Active: Jun 20 7:02am | Replies (49)Comment receiving replies
Hello everyone,
I would like to share my husband's case and see if anyone has experienced something similar.
My husband is 49 years old and was recently diagnosed with splenic marginal zone lymphoma (SMZL) involving the bone marrow. The diagnosis was supported by bone marrow biopsy, immunophenotyping, and clonality studies. PET scan did not show evidence of aggressive disease, and his hematologist considers this to be an indolent SMZL.
What makes his case unusual is that his lymphoma was discovered after a series of inflammatory and neurological events.
In late 2025, he developed transverse myelitis with sensory symptoms affecting his hand and spinal cord inflammation seen on MRI. Later, while tapering steroids, he developed purpura/vasculitis. Extensive investigations were performed for autoimmune, infectious, neurological, and hematological causes.
Further workup revealed marked splenomegaly (his spleen measured approximately 21 cm at its largest), and subsequent bone marrow studies demonstrated a clonal B-cell population consistent with SMZL. The bone marrow biopsy showed involvement by a low-grade B-cell lymphoma, and PET scan did not demonstrate aggressive transformation.
His physicians now believe that the lymphoma may be related to the immune dysregulation, inflammatory syndrome, vasculitis, and possibly even the myelitis, although it is difficult to establish the exact relationship.
He was treated with high-dose steroids, followed by methotrexate. His inflammatory markers improved but did not completely normalize. Rituximab has now been recommended as the next step in treatment.
My questions are:
1. Has anyone with SMZL experienced autoimmune or inflammatory complications such as vasculitis, myelitis, neuropathy, or other neurological symptoms?
2. Did Rituximab help control both the lymphoma and the inflammatory manifestations?
3. Has anyone been told that their lymphoma may have triggered immune-mediated neurological or autoimmune complications?
Any shared experiences would be greatly appreciated.
Thank you very much.
Replies to "Hello everyone, I would like to share my husband's case and see if anyone has experienced..."
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Hi @davidb2026 While waiting for other members with SMZL to respond I just wanted to welcome you to Mayo Connect. Your husband is very fortunate to have a great team of doctors who kept delving into his symptoms to find a diagnosis and treatment! The neurolgical symptoms he’s experiencing are quite frightening.
While I have not had SMZL, I did have an experience with a similar autoimmune related inflammation and demyelination on my spinal cord several years ago caused by B-cells. But it was not lymphoma. My symptoms were loss of sensation from my waist to my toes. Subtle at first with tingling in legs, feet, loss of sensation in the saddle area then rapid onset.
I was hospitalized for 7 days. High-dose (1000 ml IV) Solumedrol (Steroids) for 3 days, then reduced to 500ml for 4 days. After that, I had Solumedral IVs twice per week tapering over 9 months.
Also, the first month I received a weekly Rituximab infusion (4 weeks) which was very successful in calming the over-zealous B-Cells, (eliminated the inflammation) allowing for a complete healing of my spinal cord. It took a good year or so for all of the symptoms which I called “electric days” to fade. So from my own experience I considered the steroid/Rituximab treatments a miracle combo! Rituximab is a monoclonal antibody which specifically targets B-cells by binding to the CD20 protein. It’s been a game changer in treating SMZL with very positive outcomes.
I didn’t notice any negative side effects from the Rituximab. It’s not uncommon with the first treatment to have a reaction during the infusion. The infusion nurses are prepared for this ahead of time with Benadryl and steroids to inject into the IV line if needed. I had a mild reaction, drugs given, the drip was slowed way down and then I was good to go. Never had a repeat.
The first time can also take several hours if the drip rate is slow. Your husband will have a little IV line in his arm for the solution. However the IV carts are usually battery operated so he’s not stuck sitting in a chair all that time. He can get up, use the bathroom, walk around. It’s helpful to take along a bag with snacks or lunch, water, book, iPad, and charger, etc. Most infusion centers have a lounge with snacks, juice, water if needed. But it’s nice to take along favorites.
I wish your husband well on this next leg of his journey! Has his infusion date but set yet?