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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: Nov 15 7:18pm | Replies (329)Comment receiving replies
Hi Stan, I have not been on here in a while. Are you continuing to feel the benefits of the treatment? After 3 years of watch and wait I am to begin single agent Rituxan in mid January due to my spleen size more than anything else. I believe you mentioned you could feel your spleen shrink, has that continued also? I've been told it will never go back to normal, too stretched out. Thank you for sharing your initial difficulties, as I am forewarned the first treatment is likely rough. The dr. confirmed this likelihood but said that means its working. How did you make decisions about isolation? Were they following your immune factors to help you decide when to rejoin society in general? Hope you did not suffer any infections as they recovered. I don't recall how long from your time of diagnosis to this first treatment. I feel pretty lucky to have had 3 years. I believe I did read an entry in a forum of a patient who received one treatment and never needed another and he was 8 years out! Not my expectation, but good to hear anyway. Good luck with your mid November checkup. Theresa
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Theresa , I had labs and CT this morning and will have Hematology and Oncolgy appointments next week. But just looking in my portal at this morning's test results, the blood tests are all back in the normal ranges. The chest fluid ( pleural effusion ) has gone away. The Spleen is smaller per the CT report and I can also tell it is smaller as I cannot physically feel it anymore. From my perspective, today's tests are good, but I need to hear it from the doctors. I do have a slight discomfort in the spleen area, different than it was. Am guessing that is the healing process??? When people ask.... I say " Age adjusted, I feel great"
We're trying to isolate and wear masks and be careful. So far I have not had any infections, covid or flu. I did receive the covid antibody Evusheld injection after the infusions. I guess the immune system takes a long time to recover from rituximab 3 months to a year. So I will be cautious for a while yet. My family knows I am being cautious and have been helpful and understanding of my situation.
I was diagnosed with SMZL in June of 2019 and looking back at the blood tests, the Dr thought I probably had it in 2017.
I hope I have answered all your questions let me know if there is anything else. Where are you getting treatments? How many treatments will you get? Hope your infusions go well. ...even the first one.
Thanks for checking in. This forum has been quiet for a while. I wonder how everyone else is doing?.