Want to connect with others with Splenic B cell Marginal Zone Lymphoma

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

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.

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.

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

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

Theresa,

It’s been around 7 months since my diagnosis and for me the biggest challenge of watch and wait for me is the mental game. I try to walk a lot and stay active. I am meeting with doctors at Mayo at the end of April since they work across and with other medical fields of study. I find this site useful too so welcome.

Theresa,

It’s been around 7 months since my diagnosis and for me the biggest challenge of watch and wait for me is the mental game. I try to walk a lot and stay active. I am meeting with doctors at Mayo at the end of April since they work across and with other medical fields of study. I find this site useful too so welcome.

Theresa
I can't say to much about watch and wait but I can respond to to Rituximab use. I had my enlarged spleen removed in July of 2017. Then pet scan showed that lymphoma was in my bone marrow. So I had 4 weeks of Rituximab which put me in remission. Which I am currently still in. I had no side effects with the Rituximab. I wish you well.

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?

I just got a reprieve for another 6 months before I return for repeat studies. I am happy about this but wonder sometimes if I should let go of resisting treatment. Especially when I hear you had no side effects! Bravo! That is encouraging, thanks!