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

My labs are holding steady. Would you be able to connect me with someone who is dealing with non Hodgins monoclonal low grade B cell lymphoma/leukemia. Spleen is enlarged but oncologist said she has seen better and worse😳. Thanks for asking.

Hi Elaine,
I see you started a discussion specific to lymphoproliferative disorders here and have connected with others:
- Lymphoproliferative Disorder: Anyone dealing with this? https://connect.mayoclinic.org/discussion/lymphoproliferative-disorder/

How did your appointment with the oncologist go?

I have low grade B cell Lymphoma/Leukemia. Started end December 2019 with low platelets and an enlarged spleen. Platelets started to lower and spleen started to get bigger. January 2021, I had a bone marrow biopsy and aspiration which confirmed a diagnosis of Lymphoproliferative Disorder. There is no cure for this but there is treatment once I start showing symptoms. It is a wait and see. Problem I have right now is that I am losing weight and so off to see oncologist next week. Anyone familiar with this disorder?

@sunfishgirl, this is good news that zanubrutinib (Brukinsa) was recently approved and shows remarkable results. I will be interested to follow your experience as will @mariko572 @jam5 who were recently looking to learn more about people's experiences.

Is there a specific reason that you have a waiting period of 4 weeks before starting treatment?

Update: yes, I’m relapsing and progressing so it’s out with Rituxan and in with Zanubrutinib in four weeks time. Dr says he’s had phenomenal results with Z and predicts I will do well. Hope he’s right.

Has anyone else taken Z for smzl?

Hi Stan. I am 71, married, have two children and have been blessed with three grandchildren since I was diagnosed. I was diagnosed in 2019 after telling my Internist that I was having little fevers for an hour or two every day for two months. I felt 100% fine. She drew blood and all hell broke loose, medically speaking. She sent me to a hematologist who declared I had CLL (which my father died of in 1995) and ordered a bmb, a ct, a pet scan etc. All the above tests were unnecessary I now know. Fortunately I had quickly joined a CLL society support group where a very knowledgeable member referred me to a top CLL world specialist. He ordered many more blood tests, and an ultrasound of my (enlarged) spleen, and concluded that I had smzl not CLL. After three months I trended toward anemia and my platelets were low so I received four weekly rituxan treatments. All measures bounced back to normal after the second infusion. Lately the fevers have returned, and my appetite is diminished so I believe I might be relapsing. My platelets have declined and my hemoglobin and hemocrit are low. I’ll be seeing him in January and will take it from there. He said “We know rituxan works well for you so if you relapse that will be effective again.” Time will tell.

I’m grateful that our disease is indolent and highly treatable. That being said, I do sometimes worry about Richters transformation, reduced immunity and diminished energy. I’m still working half time and am physically active— pickleball, swimming, long walks. Like everyone, I’m hoping to be able to continue an active life style.

I just found this site and I also have SMZL. I was diagnosed in2019. I had treatment in 2021 and have been doing great. I just went to my oncologist this past week and was told I need to start IVIG do to very low IGG and IGA. Can anyone give me their experience with this. Thank you