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