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

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.

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

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.

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

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.

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.

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.