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

@caroldk I see you are new to connect welcome.
Although I do not have the same lymphoma or symptoms as you have. Fatigue, and pain I believe is are symptoms, some patients do experience from time to time.
I do recommend you contact your Dr's office. Were you experiencing these symptoms prior to Dec? Or have they started since getting iron infusions?
You could also have been exposed to the flu? Cause we have low resistance to viruses.
Please contact your DR, and let us know what he says if you can?

I wish you the best.
Jackie

I was diagnosed with SMZL in December of 2018. I've had several iron infusions but nothing else. I am starting to have some pain where my spleen is but my biggest problem is hurting all over my body and chronic fatigue. The last week or so I have been running a low grade fever on and off. Does anyone else have those types of symptoms? Since this is so new to me, I'm not sure if it's something else or related to the SMZL. My next visit with my Oncologist is next month and I will talk with him also. Thank you

I have just been diagnosed with a Splenic cyst and an enlarged spleen and liver. Awaiting results of CT scan next week with interest to see if my Indolent Follicular Lymphoma is back. I was originally diagnosed in August 2000. Relapsed with an extra nodal tumour on my scalp in March 2012.

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?