Hi JHart I have SMZL and after 4 x cycles of rituximab I am now 3mths into remission. I was stage 4 advanced as I had over 60% cancer cells in my bone marrow as well. My spleen was only 14.5cm and nowhere near as large as yours but I am only a small 5’3” (and a half!) . Fingers crossed that you will show some shrinkage. I gave my spleen a name and we talked most days… esp the days when he was giving me grief !
Good luck!
Fran

I have SMZL which has been treated with 8 infusions of Rituximab ending in 2025. So far still in remission !!

Hi Linda I’ve added you to my team as I too have SMZL. Great to hear that maintenance therapy is working and that there other options available too. Fran

Candace, I appreciate you sharing your personal experience. I saw the oncologist in April, 2024, but did not obtain an accurate diagnosis (SMZL) until January, 2025 after a bone marrow biopsy. The Cleveland Clinic provided a second opinion and a treatment plan. At the end of May, 2025 I began retuximab. The first treatment caused a reaction, but after an hour, they resumed. Unbeknownst to me my liver labs were too high to continue treatments, but we did two more before it was caught. This delay lasted until October when I had four more retuximab treatments. My spleen went from massive to normal with liver labs within normal range. My platelets continue to be low, but I am on B12 and iron. Cleveland Clinic recommended maintenance retuximab every 8 weeks for two years as insurance for remission. This is what I follow with a PET scan yearly. My treatment is done locally with the Cleveland Clinic available for follow-up. I, too, have been told there are other options available to me should this stop working which is nice to know. I will be thinking of you as a kindred spirit and wish you the very best outcome.

I was in “clinical remission” for two years after 8 Rituximab treatments. The night sweats, low platelets and fatigue returned earlier this year. In June I started treatment with Obinutuzimab AND Bendamustine (chemo). About to start Cycle 4 after having good result from PET Scan two days ago. The side effects of the chemo were not good but I’m hopeful I’ll get remission that lasts longer than 2 years. I have had several illnesses due to low immunity during this process as well.