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

Every 2 months since Chemo.

Sure thing Lori.
I will keep you in my prays for continued success in your situation.
Viki

That’s excellent news that the Rituximab is working so well for you. I had similar positive results and was happy this was available!
That first dose of Rituximab is notorious for a minor reaction. My doctor had alerted me that this might happen but that the infusion teams are ready for any contingency know what to do…and they did! LOL. After that, each one was smooth sailing.
I hope you’ll continue to keep us updated in Connect, please?

Hi Lori, I visit my oncologist once every second month, have a blood test etc and a maintenance dose of our favourite drug, Rituximab and I’m free for another 2 months. In January I will be finishing the maintenance dose, and wait a few months and have all the scans, bone marrow etc tests again. On the whole except for that very first dose of Rituximab it has all gone VERY well.

Welcome to Connect, @hpw. Thank you and (@vikitrees in this reply) https://connect.mayoclinic.org/comment/1100575/
for giving such positive and encouraging messages for treating your SMZL with Rituximab and/or Bendamustine. These are frontline medications that have had a good track record in bringing several lymphomas and other blood conditions under control. I also received Rituximab for a B-Cell inflammatory issue and it was a wonder drug for me.

How often do you have followup appointments with your oncologist?

I was diagnosed with stage 4 SPZL and felt pretty concerned BUT after just 6 months of twice a month Retuximab treatments I was blessed with a ‘complete remission’. Sure I would like to be told that I am cured, but at 74 years (of pretty good general health), I figure I am on bonus time anyway. Most people on Retuximab WILL go into remission. Have heart, have faith, talk to your body, praise it for all that is has blessed you with over the years, and each morning thank God for another day and each night ask for healing while you sleep. Viki. Aussie Girl

This is so reassuring for the rest of us. Thanks.

FYI:
I am a SMZL "survivor" tho' my oncologist/hematologist reminds me there is no cure. I was dx'd 9 years ago, and after 6 m of watch and wait, increasing white cells and reduced red cells indicated I needed more rx. I underwent 6 m of rituximab and Bendamustine and after 9 years of monitoring have had no recurrence, and bloodwork is normal. (Love my doc). He has been very helpful in my treatment as well as teaching me about SMZL. He says splenectomy is not recommended anymore due to less than ideal results: long-term problems and ineffective results.....it seems that rituximab and Bendamustine are the first-line treatments of choice. Hope this helps.

@lila1

Hi Lila,

I have SMZL (and WM and CLL) and just started treatment (after being diagnosed 6 months ago). Personally, if I had been given the choice of surgery or chemo, I would have opted for the latter rather than have to deal without a spleen for the rest of my life.

During those 6 months I did a lot of research (but I am a mere novice compared to Lori!). A good research paper on SMZL, if you are interested in light reading 😉 :

- Optimal Rituximab Monotherapy in Splenic Marginal Zone Lymphoma (SMZL): A Case Report and Brief Review

Conclusion: Rituximab monotherapy has favorable therapeutic effects and minor adverse effects (AEs) in treating SMZL
https://pubmed.ncbi.nlm.nih.gov/37937574/
Perhaps because of my triple condition my Mayo team recommended a BTK inhibitor (Zanubrutinib). BTKs are an entirely different deep rabbit hole to go down... but very interesting if you like biochemistry.

I hope this helps!

Paul

I would try treatment rather than have surgery. I have been on w&w since 2019. Although it is nerve wracking and not ideal, I shall opt for the treatment as I have heard it is quite successful. My doctor is at the Mayo Clinic and he has informed me that a trial is going on involving T cells that may attack our kind of cancer cells. If successful, could be a game changer🤞🏼🙏🏽