Does anyone have splenic marginal zone lymphoma?

@steiner
Hello, Prior to being diagnosed, my only symptom was that I would bruise more easily, but wasn't concerning. I just thought it was age related. The blood test showed my lymphocytes high during an annual physical. Following this, there were a lot more blood tests, a bone marrow biopsy, lab testing, and a CT that showed my enlarged spleen. The analysis of all those tests provided the SMZL diagnosis. That was in 2019. In looking back to 2016 and 2017 blood tests, my lymphocytes and platelets were showing early changes and the Dr. felt I probably had SMZL in those earlier years. . Today, I have a bit of spleen discomfort and bruise easy but otherwise no problems. I see the Hematologist every 6 months.
How are you doing and what are your experiences. Thanks

@stanleykent I’m so happy that your in remission. What treatment did you have to bring you there?
I was diagnosed with Primary Cutaneous Marginal Zone extra nodal B-Cell NHL in March 2022, had surgery in September 2022, complete excision of 1 isolated tumour which I thought was a spot, which didn’t go away and began to grow in size on my forehead. It had a halo around it or a target 🎯 like circle ⭕️, 3 Dermatologist Consultants diagnosed it as a Basal Cell Carcinoma, then after the biopsy called me back in to inform me it was a lymphoma. I was in shock. I had come to terms with it being a BCC & wanted it to be just that!!! I had no other treatment. Thank God I have had nothing since & today is 8 February 2026. I had no symptoms other than that hard red 2cm tumour which grew from the size of a flat pin head, other than feeling fatigued at about 11pm which is bedtime so I didn’t really think anything of it. I believe it was work/stress caused. I have an “incredibly” stressful job. Heading back to work this month. Are you back at work?
Take care

@stanleykent what do you hink caused it? Were you under stress about anything? Have you had PET or CT scans? What about your nutrition & exercise & sleep? any swollen lymph nodes or itching? Thanks
Take care

@steiner Hi, Regarding stress potentially causing cancers, you might look into epigenetics. There has been a LOT published on this (e.g., "Epigenetic Determinants of Cancer", https://pmc.ncbi.nlm.nih.gov/articles/PMC5008069/).

What caught my eye was the statement that epigenetic changes are reversible, so it looks like an interesting topic to explore further!

@waynepowell Hi, I got diagnosed in April 2025 with marginal zone lymphoma. My symptoms were swollen lymph nodes in front of my right ear. First they thought salivary stone- then possible mumps, after many blood tests, biopsy of that swollen lymphnode and my spleen was enlarged. I seem to get more “Raised areas” on my right forehead and my hearing was also getting muffled. I did 4 infusions in Aug. 2025 on Rituximab - the first one I had allergic reaction, they started again, slower, I got through it. I am in remission for now. I feel pretty good but I avoid crowds and sick people. I walk daily, eat organic, and thank god for another day. I am 64 years old and wonder if my years of using Round Up, ant killer, or pesticides on produce is why I got this? Anybody with this- what are your thoughts on why you got this?
Leeann

@steiner
Hello. I had not heard of your Primary Cutaneous Marginal Zone diagnosis, and does present the question of it's cause.
To answer your questions, I don't know what caused it. I had a certain amount of stress, but think everybody probably has stress in their life and how they deal with it. I retired in 2018 which ended the work stress. Nutrition....Have always ate fairly healthy but suppose I could have done better. For 5 years now, I do take a multiple vitamin, plus C, D, Zinc and Omega-3. Just hoping those supplements might help me and my immune system a bit. No problems with swollen lymph nodes or itching. PET ( not for SMZL) a couple times and get a CT every 6 months
In wondering about what caused this and my other medical problems, (My situation is a bit more complicated because since my SMZL diagnosis, I've also had two lung cancers and two skin cancers. ) I consulted with the the Clinic's genetic department and reviewed family medical history and in 2023 had genetic testing for all known cancer genes. None were identified. So I do not have any answers. Everything outside of a sterile bubble, could be suspect.... in my opinion !

In another posting, there is a reference made about Epigenetics by mrgreentea and I found that to be interesting.

@stanleykent Don’t worry no one has ever heard of Primary Cutaneous Marginal Zone Extra Nodal B-Cell non-Hodgkin lymphoma because it’s extremely rare, actually 1 in 10 million people I’ve been informed! My Consultants were floored and very upset for me.

I’ve had nothing else ever (before or after) thank God.

To elaborate on cause, I was under “incredible” stress at work which meant I wasn’t eating or sleeping properly additionally not exercising. I have researched this. My immune system became weakened & enabled a chink in my defences for this to occur I believe.
I am not retired. I’m heading back to work to pay my bills - but this time I’ll be prepared.
I also found mrgreentea’s post very interesting. I’m reading up on it.
I’m very happy to hear you’re well now.
Take Care

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.

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?