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

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.

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

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

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?

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.

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?

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

Every 2 months since Chemo.

Hi @paris1943 I read back through your previous replies to see you finished your chemo for SMZL in late January. I’m sure you’re glad that’s behind you! You also had your spleen removed as part of your treatment. Were there any adjustments you’ve had to make with the loss of your spleen?

Hi Lori, I looked up Acute Myeloid Leukemia and I can’t even imagine what a shock you must have got from getting such a diagnosis, and I’m so very glad that you have got the treatment that you have, and the amazing result that you have also. I am very interested to know just what was done to turn things around for you, that’s if you wish to share this.
Viki