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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, I am 68 years old and was diagnosed with SMZL in November of 2019. I have been watching and waiting since then. I feel okay and my labs are not too abnormal but my spleen has steadily increased in size. I am more than willing to ignore it but my oncologist is increasingly urging Rituxan because of the spleen size, although he admits it is a judgment call. Anyone with SMZL gone through this decision making process? I realize I am fortunate to have options, but I am very reluctant to leave the watch and wait period until absolutely mandatory. I'd like to consult an oncologist who focuses on SMZL but as rare it is, I'd be happy to find an oncologist who focuses on any marginal zone lymphoma. Any other SMZL patients found particular studies of interest to SMZL? Contrary to conventional wisdom, my blood work has improved since I put aside my vegetarian diet and began adding meat, poultry and eggs to my diet. I try to use this diagnosis as a reminder to appreciate and enjoy what abilities I do have each day. Thanks to those who share.
Replies to "Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I..."
Theresa, Hello, I cannot provide much information as to when treatment actually starts. I'm about your age and was diagnosed in June 2019 and am on watch and wait. My disease progression sounds similar to yours. In discussions with my Hematologist, a treatment plan should wait until symptoms worsen which affect quality of life. Could be things like Anemia, bleeding, night sweats, pain, weight loss, etc. Even an overly enlarged spleen can become a health issue. The doctor did comment that treatment is potentially around the 5 year point following diagnosis. But everybody is different as to the timing of all this. I do have some of those mentioned symptoms, but quite mild at this point.
I have my regular 6 month appointment in April for a CT and labs. Plus they will do another bone marrow biopsy and additional labs to establish a new baseline and compare to the 2019 tests/diagnosis. So in a month I'll be a bit more informed.
My SMZL appointments are at Mayo in Rochester and am pleased with their care . In 2019 I did consult with another oncology group and they agreed with the Mayo diagnosis and to watch and wait..
Am wishing you the best and please keep us updated. Thanks
At age 69 I was diagnosed with SMZL November 2021. And for 10 years I had been pescatarian diet, but now eat meat to help improve my blood counts, as I was anemic, etc. I had 4 rounds of Rituxan in January of this year and it dramatically shrunk the spleen, but I have not had anything else since then. However, I have had all 4 COVID shots, Pfizer, and also 2 rounds of Evushield which is a shot that helps to boost the immunity of cancer patients and others with immunity challenges. There seems to be a common thread that the SMZL occurs later in life and hits those of us that were active and healthy? Thank you for listening
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Welcome Theresa. I'm confident that fellow SMZL'ers like @scsimpson @waltera @kayak4me @juiceylucy @reneemp @stanleykent @cdwilm27 will join me in welcoming you to the group.
Here is a paper from 2018, a follow up to a 2007 study that may interest you.
- Rituximab monotherapy in splenic marginal zone lymphoma: prolonged responses and potential benefit from maintenance https://ashpublications.org/blood/article/132/6/666/39401/Rituximab-monotherapy-in-splenic-marginal-zone
Theresa, I can understand your reluctance to start medication, especially one that has side effects like rituximab. Have you spoken to your oncologist about the pros and cons of delaying treatment? Might getting a second opinion at Mayo Clinic be an option for you?
What are the activities that bring you joy?