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@mrgreentea

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

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

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 ?

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