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

How has your experience been thus far with Brukinsa ( Zanabrutinib) ? Any side effects? Are you taking 320mg each day in two divided doses/
Are you on any other medications for cardiac issues, such as blood thinners for Atrial fibrillation?
Thank you

Elaine. You have probably read through the previous many pages of comments in this discussion. There is alot of information and experiences that relate to Splenic Marginal Zone Lymphoma and, which I understand, is one of the many Lymphoproliferative Disorders. One of the things you'll read is the variety of symptoms that individuals will have and the different therapies that are administered. You mentioned losing weight. This was my concern as well. I think my spleen was large enough to press on my stomach and I would not eat as much. So I tried to eat more and eat more often and kept my weight stable. I did get Rituxan treatment last fall and my spleen reduced in size and I have gained weight since then.
I think you just had an appointment, Anything new or just stay on watch and see? Just curious, what part of the country do you live in and where you are getting care. Thanks

Thank you so much for sending these contacts. My oncologist checks my spleen and, although it is enlarged, it does not need removing just yet.

@elainejarrett, I believe that @jeremy17 also has low-grade B cell lymphoma. Fellow members like @scsimpson @stanleykent @tallyteresa also have experience with enlarged spleens related to blood cancer.

Does your oncologist suggest having the spleen removed or continue with active surveillance?

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.

Non Hodgkin slow low grade B cell leukemia/lymphoma. Labs came back with not much change.

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?

yes, i had a two week vacation planned and felt it was my last chance to get away for awhile. Also, it took two weeks for approval and shipping of pills to me. I've been one it for two weeks and feel pretty good. I have had a few minor headaches but nothing too painful. Tomorrow I'll have a two week check-in with my doctor, and blood tests.

@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?