Anyone else have Low Grade B Cell Nodual Marginal Zone Lymphoma

No, but I was just diagnosed with splenic marginal zone lymphoma about a month ago. I’m 45 and trying to find people who like me/my situation. I’m symptomatic and have week left of Rituxan treatment.

Yes have splenic marginal zone. Was diagnosed in January stage 4. My understanding it is somewhat rare as only 1 to 2 % of NHL get this. I have one more rounds of chemo left. Was told treatable but not curable.

I started to have low platelets end 2019. This continued and my spleen became enlarged. End 2021, some blood work showed a red flag and beginning 2022, I had a bone marrow biopsy and aspiration which confirmed I have Low grade B cell splenic Lymphoma/Leukemia for which there is no cure. So far, I am on watch and wait and have blood work done every 6 months when I see the oncologist. My last CT scan, which is done annually, showed some extra enlarged lymph nodes. My spleen continues to gow. It is very worrisome especially when there is Covid and Flu etc all around us. I would like to find out what side effects people deal with when they have to undergo treatment. All my oncologist tells me is that you feel very tired but don't vomit or lose your hair. How are you doing with treatment?

I've had 5 rounds of Bendamustine and Rituxan. My spleen had gotten so large, around 22cm where 12 is the norm. As soon as i had the bone marrow biopsy and saw the oncologist on Friday, on Monday and Tuesday i was in for 2 rounds of chemo. They also put a Neulasta pod for 24 hours on my arm to stimulate your bone marrow to making white blood cells. My white blood cells had gotten down to 1.5. After the first round i got immediate relief from the spleen. I have not lost my hair. My husband makes sure i get up to walk our dogs and i try to get on my treadmill for 30 minutes per day to combat the fatigue. Except for the first chemo have tolerated it pretty well. Hope you find some relief.

Trixie1,

I’m stage 4 too. I have not done chemo. Just Rituxan. After the first 2 treatments, my spleen has clearly shrunk and my WBC and lymphocytes have actually normalized. How is chemo working for you? Do you mind if I ask your age?

Trevor

Will know more in June when i have my last treatment. Ct scan after round 2 showed the spleen had really shrunk. I am a very active 74...not as much now.

I’m glad you are almost done with chemo. How do you feel physically and mentally? Is chemo working? I assume you’re not in the US since you’re doing chemo? On another note…“Somewhat rare” is an understatement. A rare condition is defined as fewer than 200,000 pts in the US. Ultra rare is fewer than 50,000. SMZL has only about 1500 diagnosed each year! We should buy a lottery ticket!

I am in the US. It's a combination of chemo and immunotherapy. Sometimes it takes a week to get over my Monday, Tuesday, Wednesday rounds for the month. Will get some scans after my June rounds. I' m trying to beat the fatigue and stomach pain that hits intermittently. Someone suggested the SMZL group on Facebook and I've gotten information and validation from them that I didn't get from my doctor.

I have it also. Just wondering why you are having chemo as I was told you are treated with antibodies. Am I ignorant and thought Rituxan was not chemo? How are you doing? What kind of chemo and how did you do on it? Side effects? Is it working for you?

Bendamustine and Rituxan along with Nuelestra. Combination of immunotherapy and chemotherapy. I have had 6 rounds and await my CT scan next month. Still got my hair and i combat fatigue with exercise. If i gave in and just sat around or laid down i feel sure i would have felt worse. No other treatment for SMZL. Not enough of us get it to warrant research.