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

Stan,

Thank you for sharing. Any idea if recurrence is generally the same B cell profile, or if it changes in some way the second time? Also, did you learn that when there is a recurrence does that mean that the Rituzan didn't kill all the B cells in the first treatment?

I am curious if you are going to Mayo or elsewhere. Also, if you bothered with getting a second opinion. If going to Mayo, if you sought out an SMZL expert. There are 50+ oncologists in Rochester & I didn't find a way to filter on expertise.

Paul

Hi Laurie,

Thank you for sharing those details - I'm sure everyone will be curious. There aren't a lot of us with SMZL out there!

I've read some research papers saying sugar might not have an impact... It seems like it may or may not be useful, and might be different for each of us. With my now monthly blood draws, I am taking the opportunity to change some things up to see if it might have an impact. This month I have stopped drinking my 1 beer a night, and I'll be doing at least 15 minutes of active exercise at least 5 days a week. It'll be interesting to see if it changes anything.

I am curious if you have looked for 2nd opinions or if are are still with your original team. I don't know if any other doc will know more than my current one. From what I am reading the standard care is watch and wait until key symptoms show up and then prescribe Rituxin... so, it seems like a new doc would not suggest something different.

Paul

I have smzl. Will start rituximab fri feb9th. 8 hours

Paul. I'm not sure what your lymph node biopsy is saying but you'll have to get your Dr. interpretation of those results.
You wondered if Rituzan will treat the B cells mentioned in your lymph node biopsy. Rituxan will cause the demise of just about all B cells. The bad ones and the good ones. In general, it seems like most folks are put on watch and wait until their symptoms/problems require treatment. Often the first line of treatment is rituxan.
In 2022, I had 4 rituxan infusions. Each a week apart. Many folks, as I, had problems during the first infusion as our bodies didn't care for the stuff, but eventually my infusion was completed. And for me, the other three treatments were uneventful and maybe just a bit tired the day of, and felt normal the rest of the week. My lymphoma symptoms are gradually returning and eventually will need some sort of treatment.
Also, I'm in the Minneapolis area.,
Ask questions as they come up.

Hello Paul! One thing I have learned is SMZL is not easy to diagnose. Mine came after routine bloodwork and included more bloodwork, an MRI and a spinal tap. My WBC wavers in the 40 - 50 range. My spleen is only slightly enlarged and my oncologist has me get an abdominal ultrasound annually. They are adhering to the wait and watch protocol and there’s been no mention of meds since my numbers are relatively stable. I’ve also learned that relativity moves along a spectrum!

Recently I went through two bouts of cellulitis in each foot. My diabetic (Type 2 well controlled with an A1c of 6.2) neuropathy seems to have caused such dry feet that infection occurred. It was rough, but to top it off, my spleen reacted to the 2nd infection by increasing in size by several centimeters, causing night sweats and lethargy. I even was diagnosed as anemic.

It was a scare so at age 68 my team and I moved to add two things to my health plan; a podiatrist and IVIG infusion - to increase my igg levels and boost my immune response. (To be honest, I was the holdout on the infusions.). I had my first infusion two days ago and it went extremely well. A second infusion is scheduled in 4 weeks. I believe we’re going to watch my igg levels and base future infusions on that number. (I’m usually in the 400’s - pretty low / but it does fluctuate.). Sorry for the long description of my recent journey.

I’m finding more research and potential strategies for SMZL. In another message I noticed a reference to giving up sugar and I will say that I strongly suspect my spleen/bone marrow health is connected somehow to diabetes, diet and exercise. No direct link but I try to maintain a healthy lifestyle. These days I’m not shy about wearing a mask and avoid large, close crowds. At least for now.

I hope this helps in some small way. This platform has been very helpful to me. Let’s continue the dialogue!!
Laurie

Hi Elaine,

I'll have to investigate ozone/Vit C IVs. I've been drinking loose leaf green tea for over a decade, averaging about 64oz a day (multiple steeps - so not as much caffeine as it would be otherwise). Obviously, this did not stop my condition from appearing. I have zero idea if this has any impact but I have no intent to stop until the docs tell me I need to. 🙂

My spleen is around 17cm - my doc said that's about 4cm larger than normal. This is my new baseline to watch & see how quickly/slowly it gets bigger. As we don't have more than 2 months of data, my doc wants blood tests once a month for now to see how things are trending.

There is obviously so much that is not known within the medical complex about how to deal with this. It's too bad that we each need to guess on what to do. I do think that we are on the precipice of new genetic drugs within the next few years. I do hold out hope that we will be able to benefit from them!

Btw, for me, a way that worked to change and establish a new diet (and reduce/eliminate some bad choices) was going on a trip. Being in a new place seemed to make it easier, and when I came back it then seemed easier to keep up the new diet.

Paul

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.

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 ?

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.

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