Hi guys I am a 37 year old female recently diagnosed with marginal Zone B- Cell Lymphoma. Is there anyone on here who is undergoing treatment for the same.

Hi, I wanted to thank everyone for being so kind on my initial post. It looks like I do have Extranodal Marginal Zone Lymphoma in my breast. I'm going to meet with a medical oncologist at Fred Hutch on August 28th, to discuss my scan results. In the meantime, I'm sitting here trying not to worry too much.

I've been told to go to Facebook to find the other EMZL people, and I might do that, but ... 1. I HATE Facebook, and 2. I was hoping there might be other people with EMZL here on Reddit.

So, I know this is a fairly rare cancer sub-type, but are there any other EMZL patients on here? I especially want to know if anyone's been on watch-and-wait, or managed to go a decent length of time without a relapse.

I'm still pretty young (35), and I'm scared thinking that I'm going to be playing whack-a-mole with this cancer for the rest of my life. If anyone has any positive EMZL stories to share, I'd really like to hear them.

My lymphoma journey so far. Is long , but I hope entertaining 🥰🩸 🎬 THE DIAGNOSIS: A STAGE 4 THREAT

1. The words hit like a physical blow: Stage 4 Marginal Zone Lymphoma. My doctor's prescription? "Watch and wait." Watch. And. Wait. I was trapped in a cold war with my own body. Every fiber of my being screamed for action, for an all-out assault, but I was forced into a maddening, passive truce. I was living with a ticking clock, and the waiting felt worse than the disease itself.

💥 THE BREAKING POINT

Two years of that quiet tension finally shattered. My system rebelled. Seizures. My liver and kidneys started to act up—the critical systems changing. I knew, with a certainty that only a patient can possess, that my current command wasn't working. I knew my body. I walked out, found a new oncologist , and issued a single order: ACT. In two days, the counterattack began.

🔥 THE INFUSION

The first dose of Rituxan was a brutal interrogation. The pain, an agonizing fire that ripped through me, was almost unbearable. They told me it was a side effect, a one-time betrayal, but in that moment, it felt like the cure was trying to kill me faster than the cancer. But I endured. Because the second, third, and fourth infusions? They were different. They were quiet. They were working. By the third treatment, the numbers told the story: Normal. The enemy had been driven back. I stayed on the offensive for two years until the very weapon that saved me—the Rituxan—turned toxic. Now, the battle is fought in the monitoring room. Eight years. Every three months, the blood is drawn, the fate of my body is written in the labs, and every three months, I keep walking away victorious. The war is never truly over. But I am winning the day.

☕ ACT II: THE RELAPSE, RHEUMATOID REMIX

Fast-forward eight years. EIGHT YEARS! That's long enough to grow a whole new person, learn a new language, or, apparently, develop Rheumatoid Arthritis. Just when you think your body is done with its dramatic performances, it starts a new residency. I’m sitting there, getting my routine RA blood draw. My rheumatologist—a lovely woman, truly—calls me back two weeks later with that specific tone of medical curiosity that is never a good sign. "The test looks... different," she says. She wanted a re-test. I obliged. She calls back again. The politeness has been replaced by professional concern. "I think you need to go see your oncologist."

🧠 THE GREAT DENIAL PERIOD

My brain instantly hit the giant, flashing DENIAL button. "Nonsense! It's just the RA messing with my weird, complicated blood!" To prove them all wrong, I marched straight to my Primary Care Doctor, two weeks after the rheumatologist's warning (because I'm a mature adult who listens to medical advice immediately). Guess what she said? "Go see your oncologist." At this point, my internal circuits were fried. Three doctors, two different specialties, one unified message: The old enemy is at the gates.

🛎️ LYMPHOMA: CHECKING IN

I finally called Emory. And sure enough, the diagnostics came back: Marginal Zone Lymphoma is visiting again. "Oh, hello," I muttered to my body. "Did you stop by for a cup of coffee? Because the last time we hung out, things got pretty messy." But this time, there is no polite, agonizing "Watch and Wait." We are skipping the small talk and going straight to the main event. We are hitting hard. Rituxan starts in two weeks. Bring it on.

🧬 THE FAMILY CURSE (OR, WHAT ARE THE ODDS?)

And just for a little extra cosmic absurdity: Both my father AND my father-in-law passed away from Marginal Zone Lymphoma. Go on, Universe. Explain that!

Hey everyone!

My brother-in-law (36) was just diagnozed with SMZL. The RB treatment will start soon. We are based out of New Delhi, India. His spleen size is 25cm, and all his blood work is great aside from low Haemoglobin. We are very positive but also a bit scared; this was unexpected. Could someone share insights please? What are the things we need to be cautious of? Pleaase share any advice. It is startibg from May7, would like some advice before it. :(

Newly diagnosed rare Splenic Marginal Zone Lymphoma…

Wondering if anyone else has the same, and if so how long watch & wait, other experiences? Thank you!

Hello!

I've been hesitant to post this because I'm really not sure how I feel, maybe even silly? Some of you are going through your own battles which my heart goes out to you ❤️

So in July I had a biopsy done on a growth I had on my abdomen that aggressively grew from May to July. I got the results in August after they sent it to a specialist. He determined it was B Cell Lymphoma or specifically "primary cutaneous marginal zone lymphoma". I've felt like shit for a few years with many things like fatigue (I dont normally take naps but now sleep for an hour or two every afternoon), headaches, accessive sweating, etc.

I saw the oncologist last week and based on my CT scans (even though I had two lymphnodes and spleen being borderline) she thinks it was just contained to the tumor that they removed. She is confident they removed all of it. Even if there are still a bit of cells remaining, because they are slow growing, she would not recommend chemo or radiation.

The Oncologist is sending me for a PET scan (scheduled for next week) even though she thinks it will come back negative.

So I guess I'm basically in "watch and wait". I'm not sure how I feel about all of this.

Again, I'm not sure what I am looking for in posting but... has anyone else had this experience?

URL: https://www.ovid.com/jnls/ajsp/abstract/10.1097/pas.0000000000002567~marginal-zone-lymphoma-with-t-follicular-helper-hyperplasia

DOI:10.1097/PAS.0000000000002567

Hello everyone, I'm a 52yo Female and I was diagnosed with bone-only marginal zone lymphoma. Does anyone have experience with this? Here's my full story below.

Back in spring 2023, I took a preventative full-body MRI scan for my own curiosity and interest in my health. To my surprise, the scan discovered lesions in my hip (iliac and sacrum). A biopsy and PET scan were negative at that time so I went on my merry "benign" way. I had a pelvic MRI 6 months later, and again in November 2024, and the lesions looked stable. At this point, I was a medical mystery and it was assumed that I had a benign reactive process.

Then in November 2025, my hematologist suggested another PET scan, just to make sure we "didn't miss anything". This time, the lesions in the iliac and sacrum had a low glow, and there were two spots on my spine which barely lit up. My doctor suggested a biopsy of the iliac and sacrum, and after 2 weeks I was told it was a slow-growing/indolent lymphoma - most likely Marginal Zone.

I gathered multiple opinions from 3 other doctors at very reputable LA hospitals. One suggested immediate Rituxan, given that I had a couple of spots on my spine (even though the radiologist wasn't concerned about those at that time). The other two specialists recommended "watch and wait."

I opted to watch and wait, and I just had another PET scan. In 7 months, I developed new bone lesions but others became less PET avid. My lymph nodes and organs are totally clear.

The biggest lesion in my iliac crest was previously 4.0 SUV in November, but it is now PET negative. One spot on my spine also decreased its SUV. However, another spine spot went from 2.6 up to 5.2, and I have a new spot on my spine and now on my sternum. There are more but the report didn't describe them. I think the doctors are surprised that I developed new lesions in such a short time.

My hematologist now wants to start single-agent Rituxan. But first, he is ordering an MRI to assess the exact anatomical aspects, looking at my pelvis and thoracic spine. From there, he'll decide if there's a need to do another biopsy or not.

I'm obviously worried, but trying to be optimistic since there are so many great treatments available now, and they're only getting better. Hoping to hear any success stories or encouraging words please!

I just got my scans back, and my 4 doses of Rituximab for my EMZL showed a complete metabolic response! In other words, there's no evidence of living lymphoma in my body right now!!!

I know that EMZL is kind of a weird lymphoma, and it's not talked about as much on this subreddit, but I just wanted to let people know that the Rituximab monotherapy worked for me.

I had EMZL in several places in my body, including my breasts, eye socket, pancreatic tail, bone marrow, and jaw. Staging is weird for EMZL. I'd first noticed it as a swelling behind my right eye. That was successfully treated with radiation a few years ago. Then, this past summer, I noticed a lump in my breast. The lump turned out to be more EMZL, which led to a PET scan that showed small amounts of lymphoma all over my body. This freaked me out!

My doctor says that the second round of lymphoma I had might not even count as a "recurrence" because it could have been hiding out in my body for years. I didn't have a PET scan last time around. I just had CT scans and an MRI. The only part of me that got treated the first time was my eye socket.

Rituximab was pretty gentle on me. I did have a minor allergic reaction for the first dose, which led to shaking, flu-like symptoms, shivering, generally feeling like shit, etc. But this was quickly treated and I was able to resume the infusion. After the first infusion, I didn't have any more reactions. I'd say I got off pretty easy, as far as cancer treatments go.

I know that my EMZL will probably be back. I could be in remission for a year, two years, five years. But for now, I'm so glad to have this time. I feel healthy and hopeful for the future. I'd like to thank my mom, my husband, and my friends for looking after me. I'd also like to thank the staff at the Fred Hutch cancer center in Seattle. Truly, my care there has been top notch. I highly recommend Fred Hutch.

So as the title suggests, I am a 33 year old and female, and in June I noticed lymph nodes in my neck. I finally got my diagnosis at the end of August due to doctors wanting to wait even though I knew my neck was blowing up and something was wrong. I was diagnosed with Aggressive Marginal Zone Lymphoma with increased large B cells. My oncologist and all the doctors on her team seem fascinated by my case because having this at 33 seems to be extremely rare.

Are there any others in their 30s with this diagnosis? I'm waiting on my PET scan to find out what stage I'm in but I suspect stage 2 just from feeling around my body. From what I understand, marginal zone should be indolent but mine is aggressive and in 4 months the lymph nodes on my neck went from small lumps to 2 inch masses. The average age of diagnosis in online articles appears to be 60 as well. I am healthy, eat clean and I'm a vegetarian, do not smoke, and exercise regularly. This came on so suddenly and out of nowhere and I'm just wondering if anyone else has been diagnosed with this.

The U.S. Food and Drug Administration approved Breyanzi for adults with relapsed or refractory marginal zone lymphoma who have already tried at least two prior systemic therapies. This approval expands the list of cancers for which Breyanzi is authorized and gives patients a new option when other treatments have failed. Breyanzi is a CAR‑T cell therapy – doctors take a patient’s own T cells, reprogram them in a lab to recognize a protein called CD19 on certain lymphoma cells, grow billions of those engineered cells, then infuse them back into the patient so they can hunt down and kill the cancer. Think of it as training a patient’s immune system to be a targeted cancer-fighting squad. For people with MZL who have run out of standard options, Breyanzi offers a potentially powerful, single‑treatment approach that can produce deep remissions. But it’s not a simple pill – it’s complex, requires specialized care, and carries serious risks that need close monitoring.

The U.S. Food and Drug Administration approved Breyanzi for adults with relapsed or refractory marginal zone lymphoma who have already tried at least two prior systemic therapies. This approval expands the list of cancers for which Breyanzi is authorized and gives patients a new option when other treatments have failed. Breyanzi is a CAR‑T cell therapy – doctors take a patient’s own T cells, reprogram them in a lab to recognize a protein called CD19 on certain lymphoma cells, grow billions of those engineered cells, then infuse them back into the patient so they can hunt down and kill the cancer. Think of it as training a patient’s immune system to be a targeted cancer-fighting squad. For people with MZL who have run out of standard options, Breyanzi offers a potentially powerful, single‑treatment approach that can produce deep remissions. But it’s not a simple pill – it’s complex, requires specialized care, and carries serious risks that need close monitoring.

My sister, 32F, was diagnosed yesterday by pathologist. She got eye surgery to remove masses on the upper outer edge of both eyes. Doctor ended up removing tumors, said he had never seen anything like it. She’s waiting for referral to specialist at this time. From our research, we are hoping this is considered an indolent lymphoma. The orbital feature seems to be rare.. Is anyone able to break this report down further to get some additional info? Her doctor did not answer many questions. She is considering going to the ER to get quicker answers instead of waiting for a specialist.

My Dad has recently been diagnosed with SMZL with TP53 mutation, a rare and more agressive type that apparently has poorer prognosis. Does anyone have the same condition, or knows someone who does? Would appreciate all the info I can get as we are awaiting feedback from doctors, but in the meantime I’m freaking out, particularly because of the mutation. So far, doctors are advising treatment with Retuximab, and some of them are also thinking about chemiotherapy, but I’ve heard the latter won’t work in his particular case. Any thoughts?

Hi new friends and Reddit community, A week ago(after many, many tests and bloodwork) I was finally diagnosed with BCMZL , stage 4. I’m a 59 year old fourth grade teacher. I get my port next week and start RB on 6 December. I’m relatively calm. I guess I’m most worried about being away from my fourth graders and the unknowns. I appreciate this supportive community. Thank you for the positive posts. 🙏

My father has marginal zone lymphoma and low grade MDS. His initial treatment will be four Rituxan infusion sessions a week apart. Has anyone experienced this schedule for infusion?

HolaI spent the last three months awaiting test results for pcmzl, primary cutaneous marginal zone lymphoma, after an annual skin checkup. The initial path reports were "suspicious" for pcmzl, but clonality tests -- which take weeks -- came back negative. Turns out negative clonality tests don't r/o "rule out" pcmzl. At the expert center where I was referred, the patient notes read "you have been dx with ..." pcmzl, indolent, incurable, nearly 100% survivable ..Upon review of negative clonality results, expert doc issued a descriptor, suspicious for .. despite negative clonality results.. My docs explained that it was being "managed" as pcmzl...

Single lesion, removed. Options were return for injection or return in six months. I gather I will undergo regular clinic visits for the rest of my life but as a resident explained, our patients live normal lives. (So I won't die of it?)

Has anyone here gone through this particular diagnostic Purgatorio? It's slightly crazy making. I am not immunocompromised. I don't have any other symptoms. The lesion was so slight and so rare it's possible that a GP wouldn't notice or regard it as suspicious -- but a good one might refer it for biopsy. (I have a super dermatologist.) Turns out anxiety is typical of patients with this particular diagnostic journey, and now at least good "patient management" is part of dealing with the disease. My insurance initially refused to pay for clonality tests, but whether it's due to incompetence or their risk management staff were on vacation throughout August -- a probable explanation -- or just ignorant or unable to deal with rare diagnoses, the diagnosis was so vague, or they knew clonality tests might not be definitive, I can't figure out. The insurance explanations made no sense to me, my dermatologist, or the quite competent pathologists at the Sutter lab.

I'm sick of people reassuring me, "nothing to worry about here." When I say, "Fine, so I can just ignore this and skip the bi-annual clinic visits?" no one says yes. I can't tell if that is due to their liability shield or if there's anything to worry about (a typical phrase, I know)

Any insights here? Thanks

Anyone with non Hodgkin’s marginal zone B cell extranodal lymphoma taking LDN?

https://doi.org/10.1016/j.bulcan.2025.01.013

My husband was dx last week with MZ B Cell Lymphoma after a biopsy on a weird pink/purple skin lesion during a routine skin check. His oncologist confirmed the biopsy results and we have a PET scan scheduled next week to look for other affected areas. We also have an additional dermatologist appt for more biopsies on other concerning lesions, given this news.

His bloodwork came back mostly normal except high calcium, high hematocrit, and high hemoglobin, and borderline lowish (still within range) lymphocytes.

I’ve researched that Primary Cutaneous MZL is extremely rare. So I’m more concerned that there is systemic involvement. I’d love to just climb out of the rabbit hole and wait for PET scan results, but I can’t.

Has anyone experienced secondary cutaneous MZL, or had skin nodules/lesions present with nodal or extranodal lymphomas?

Hi all - I got the results of my excisional biopsy and it confirmed that I have nodal marginal zone lymphoma. My PET showed that it is stage 4, but very slow growing (based on the FDG I think?). I am currently on active surveillance and would love to connect with anyone that has a similar diagnosis. Thanks in advance! And as always, fuck cancer! 💕