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

Yes, It was discussed, however the doctor was totally NOT for removal of the spleen.

I was diagnosed with splenic marginal zone small b cell lymphoma in April of 2017. The Doctors at Mayo Rochester removed my enlarged spleen July 2017. In September 2017 I had another bone marrow biopsy and flow cytometry and the lyphoma was still in the bone marrow. In October I started 4 weeks of Rituxan. Had no side effects to the Rituxan. After the Rituxan the lymphoma is now gone but I still have night sweats and fatigue . I am now on wait and watch until the end of January next year.

Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience taking rituxan (rituximab). @dougmann also has some experience with spleen pain.

@grand4, if you don't mind me sharing, was removing your spleen discussed with you as a potential treatment?

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

My diagnosis is large B cell and follicular non Hodgkin lymphoma. All I know about waiting for pathology results is that you just have to wait. That gives you time to google it and get your questions ready! I know the waiting is tough, that the I information should be available immediately, but that is that. I have never had a bone marrow test.. Good luck.

I am a 65 year old man. I must have missed typed. It should have read ITP. Idiopathic thrombocytopenic purpura. My main complaint is fatigue. It started to get better a few weeks after my splemnecctomy but now has returned.

Hello @scsimpson, and thank you for posting your first post.

My knowledge of splenic marginal zone lymphoma is a bit limited, but I am understanding that it is a type of B-cell lymphoma that affects the spleen. We do have some members talking about B-cell lymphoma, and while they may not be in the exact same situation as yourself, they may be able to provide some incite and experiences to share with a bone biopsy and the waiting for results. @ginpene05, you recently mentioned you were diagnosed with Non Hodgkins Lymphoma after a bowel resection recently, do you have anything to share with @scsimpson (If you are replying by email, click VIEW & REPLY so you can see their original post) about having a bone marrow biopsy or any advice on the waiting for answers and diagnosis?

I'd also like to invite @travelgirl to share her thoughts with the waiting for tests as she has follicular lymphoma (another type of B cell lymphoma) and is on a wait and watch approach with her physicians. @jwilson11 has also underwent a bone marrow biopsy for follicular lymphoma and may be able to share their experience with that. Although these are not the exact same lymphomas, they are from the same B cell family and may share some commonalities.

@scsimpson If you don't mind, and if you are comfortable, would you mind sharing a bit more about yourself and your situation? You mention LTP, could you clarify what that stands for?

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?

All the best with the last infusion next week. Stay in touch.

Hi Colleen,
Thank you for your message. I have met two other women through another website who have SMZL. One just finished her initial six weeks of Rituxan. She's very private and hasn't said whether she'll be having maintenance therapy. The other woman is still watch and wait. I was diagnosed in November 2014 and started treatment right away. Next week is my last infusion. If I can help April or anyone else, I'm happy to do so.
Take care,Andi