Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Lori. Hello. The October appointments will probably dictate if they'll do treatment or continue watch and wait. I feel pretty good now, so we'll see.
A year ago when covid was more prevalent, I felt the Hematologist preferred to stay on watch and wait as long as possible.

I'm sure BB I had SMZL in 2022 but no one diagnosed it. My former oncologist wouldn't even discuss it. In January 2023 went to the ER because I was in a lot of pain and hadn't been able to eat. My BB WBC was be 1.5 and my BB spleen is was 22 cm. My new oncologist who thought he was seeing me as I was 6 years into my diagnosis of breast in cancer sent me for a bone biopsy and it came back with splenic marginal zone lymphoma, stage 4. That was on a Friday. By the next Monday I was getting Rituxin and Bedamustine along with Neulasta 2 days a month for 6 months. Just CT scans and nothing else!!

I have SMZL and have had Spleen removed and in my 7th Chemo treatment, have one more to go! Not sure what is next beside a CT body scan next week.

Welcome, @paris1943. How are you doing on chemo? What side effects are you managing?

Hi,
Guess I could say managing, next Tuesday is last Chemo. Back pain is awful, fatigue, no hair, short term memory! Thankful not much nausea.
Thanks for asking!

Hi Laurie, I just saw this post - I hope you are still doing well!

I just went thru a battery of tests at UMN cancer clinic over the last 2 months and it now looks like I have SMZL. I have had PET scans with contrast, a bone marrow biopsy, and plenty of blood tests. They are just waiting on the lymph node biopsy to narrow it down further.

I'm 64 and thought I was in good heath until my WBC showed up above 30k during a routine physical last Nov. Really not much in the way of incapacitating symptoms so far.

Due to my high WBC and low RBC counts, my doc thinks that I might need to due a round of rituximab within 6 months if my counts get worse.

Would love to know what you have learned in the last 4 yrs!

Paul

Hello Elaine,

So far, it sounds like I may be in a similar condition to what you describe above - I was just diagnosed. No symptoms (other than some lethargy). I'm curious if you have been advised about any special diet, helpful supplements, or told about things to avoid eating.

Paul

I go to. Naturopath to have ozone treatment and vitamin C IV once a week. It’s expensive and cannot say for sure if it’s helping or not. I take some supplements but these are from the naturopathic doctor who is also an MD. My oncologist advises me to lose weight and limit sugar which is really difficult for me. Years ago, one of his patients went on an all plant diet and the problem went away. Could not remember patients name as it was over 20 years ago. Must have done more than just a plant based diet. So far, I am just tired too. Oncologist doesn’t have much to say when I go. Labs are drawn and my spleen is felt. The latter is getting bigger and I am told once symptoms arise, then I shall get treatment. Other than that, nothing. I worry though.

Paul. Just want to say hello and welcome you to this connect site. As you read through the many pages of this forum, you'll see that SMZL is diagnosed through a variety of tests and folks will have various symptoms, and treatment paths. You indicated you're waiting on lymph node biopsy. Are the lymph nodes enlarged? For me, the CT results have commented on lymph nodes but only slightly larger than normal and not changing. Lab results showed WBC were high and platelets low and RBC have stayed in their normal range. 2022 Rituxan treatments brought those results back to normal range. Since then, they are gradually headed back to pre-treatment levels.
Also, Is UMN the University of MN ?

Hi Stan,

My lymph node results came back today. Seems l have a cocktail of deviant B-Cells. I am curious if Rituxan will only treat a subset of those. I will ask my doc.
CD5+ lambda-restricted B cells (about 18%)
- CD5+ kappa-restricted B cells (about 14%)
- Kappa-restricted B cells negative for CD5 and CD10 (about 36%)
- Kappa-restricted B-lineage cells/plasma cells (about 1%)

My WBC this time was >36K, RBC and platelets are on the low side.

How did your Rituxan treatments go? Were you able to function normally between them, or did you need to take time off (if you work)?

My doc mentioned that follow up treatments post-Rituxan could involve other therapies. I did find this article on the web, in case you are interested. Here is a relevant excerpt. Has your doc discussed any alternatives? It sounds like you are still in a sit & wait period.

"The current therapeutic scenario is predicted to rapidly change as emerging novel agents, especially Bruton's tyrosine kinase inhibitors, have demonstrated promising efficacy and safety profiles, leading to their approval in the relapsed setting.

Moreover, a large variety of novel agents (phosphatidylinositol 3-kinase inhibitors, chimeric antigen receptor T-cells, bispecific antibodies) are being tested in MZL patients with encouraging preliminary results. https://pubmed.ncbi.nlm.nih.gov/36485086/ "

Yes, UMN is U of MN.