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

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

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@paris1943

Every 2 months since Chemo.

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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?

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@loribmt

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?

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Every 2 months since Chemo.

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@loribmt

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?

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

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@vikitrees

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.

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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?

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@loribmt

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?

Jump to this post

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.

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@hpw

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.

Jump to this post

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?

REPLY

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

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

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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.

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@loribmt

Hi @lila1. Welcome to Connect. You came to the right place to be able to chat with others who share your diagnosis of Splenic B cell Marginal Zone Lymphoma.
I see you’re in the watch and wait phase which can often feel like you’re waiting for the other shoe to drop. So I hope you’re not letting that interfere with just enjoying life to the fullest. Those pesky “what ifs” can be such stressors.

From reading your other replies, it looks as though your doctor has given you potential treatment options of infusions with Rituxan or a splenectomy? Is there a reason you’d prefer the surgery instead of infusions? Rituxan can be a pretty effective medication especially where B-cells are concerned.

How long ago were you diagnosed?

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@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

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