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

Hi Elaine,

I had a routine physical 12Dec23 and learned about my 35 WBC. My doc advised a follow-up with an oncologist. I started that journey on 15Dec23 at UMN with Dr Hu. Many blood tests, CT w/contrast, and ended in the last two weeks with a bone marrow drilling expedition and a lymph node sampling (I have it in my bone marrow, spleen, and some lymph nodes). So, all in all it's been about 6 weeks to get my baseline analysis. The care at the U has all been good.

I was at Mayo for a few things in the past & it was also good. Mostly I think I saw PAs more than docs. It would have been a lot of driving for all those tests. Still pondering what a second opinion might get me given that the status quo seems to be wait & see & then Rituxan, but I might try anyway.

Do you like your doc @ Mayo?

Paul

Your story is very similar to mine. I have an ultrasound on my spleen this Tuesday as it is starting to bother me.
I winter in Florida so see an oncologist here but as soon as I get back to Minnesota, I see Dr. Witzig at Mayo. Which doctor do you see? How often do you get a CT scan? I am fortunate to be able to discuss this problem as very few people have it.
Elaine.

Paul, My understanding is the re-occurrence is the same type B cell. The b cells, good and bad, are made in the bone marrow and after treatment, the bone marrow continues to produce more good and bad b cells. My really basic understanding is that for some unknown reason my bone marrow started to produce these smaller than normal bad b cells, A normal b cell has a life span of a couple weeks and they die off and are filtered out by the spleen. The bad b cells don't act like a normal b cell in fighting infections, etc and they don't die. And since they don't die or have a much longer life, they go to the spleen and accumulate and my spleen grew and grew over a number of years. Rituxan kills all the b cells and the spleen sort of goes back to normal size. The bone marrow is still making bad b cells and the spleen will gradually get larger again. Each person is different and some seem to have better treatment results. Some SMZL will morph into something else as well. Clarify all this with your doctor.
The start of my SMZL journey was a high white blood count and low platelet count during a routine physical in 2019. Doctor looked back in test results and figured it started prior to 2017 as levels were changing back then. My primary care doctor referred me to a local oncology group and could not get in for a month. I called Mayo and got in within a week and was diagnosed the following week. I did keep my original oncology appointment and they confirmed the Mayo diagnosis and I kept going to Mayo. At Mayo, the Hematology group works with the blood cancers and within that group, there are a some that see the marginal zone/B cell lymphoma patients. I get blood tests and appointment there every 6 months.
A Mayo second opinion would involve getting copies of or releasing all of your medical records so Mayo could see all imaging and test results.
My 2019 testing also found a really early stage lung cancer and have had two lung surgeries since then. I also see an Oncologist every 6 months, too.
So I have had a lot of care in Rochester and am very very pleased with everything they have done.
I know, this was hard to learn and live with. Gradually it became my new normal.
Hope this helps you.

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.