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

Hi Viki. You are right, my AML diagnosis was a complete shock. To that point, I’d seldom ever been sick or hospitalized except for the birth of our daughter. I did everything right! Ate super healthy, exercised, didn’t smoke and had occasional glasses of wine! At 65, I was feeling great and thought I might just cruise into my ‘golden years’ without an issue. Hah! Mother Nature had other plans…LOL. Anyway, lots of chemo and a bone marrow transplant 5 years ago has me in a durable remission. I quite honestly feel that nothing ever happened.
I learned that things I feared most in life such cancer or chemo, turned out not to be the worst things in life.
I’m so grateful for the medical care I received at my local clinic and Mayo-Rochester. Without their dedication and concern, quite frankly I’d be pushing up daisies from the underside many years ago already.
That’s why I’m here in Connect…to offer hope and encouragement for anyone faced with a blood or bone marrow cancer/condition.

I started a new discussion a few years ago for other bone marrow transplant members and shared my experience with both AML and the transplant.
This is one of my replies to another member who shared her story:
https://connect.mayoclinic.org/comment/335081/
A few years ago, I was able to actually meet a young woman I mentored through her transplant. An editor from Mayo picked up the story and published the article. Sky, the young woman in the story has now graduated from her university and is heading to grad school!
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I’m so happy that you’re doing well with your treatments, Viki. Better living through chemistry, right? 😅

Diagnosed May 2024. Got 3 opinions, read research. Splenectomy has pros/cons, as does rituximab. They all seem to result in similar OS and PFS. In my estimation it appears a toss up, a personal choice. Would you prefer to have infusions that affect your immune system one way or surgery that affects your immune system another way? Clearly oncologists tout rituxan over OG surgery. But if you are on the young side with low marrow involvement, why would you choose rituxan over surgery? Please freely share advice!

Given that you’ve done your research on both splenectomy vs Rituximab and have gotten 3 opinions…and you, as well as your doctor, are comfortable with your decision to go ahead with the spleen removal then I think you’ve made the decision that’s best for you.
I did find a site you might find helpful in validating your decision: https://www.mayoclinicproceedings.org/article/S0025-6196(19)30506-3/abstract#:~:text=Consensus%20guidelines%20and%20recent%20appraisal%20of%20the%20evidence,treatments%20in%20the%20absence%20of%20increased%20surgery-related%20risks.

I was just going to link you to another member, @bmisslich who had a splenectomy but I see you beat me to it!! ☺️. Hopefully they can give you some insights as to living without a spleen.

Wishing you all the best. Keep me posted, ok?

Want to take IV Vitamin C as complementary therapy, with SMZL. Since my spleen is already slightly enlarged from sequestering platelets, would a supplement known to increase platelets (vitamin C) make the spleen enlarge even more? My hematologist said “no” but am wondering if anyone else with SMZL has experience with IV Vitamin C and its effects? Thanks!

Thanks to all of you for your thoughtful responses! Am learning so much from you.

Hi Elaine, do you do ozone sauna or ozone IV? I’m interested in this idea. Am currently doing weekly IV vitamin C. Thank you, Lila

Vitamin C therapy is new to me so thank you for making me aware. I'm a SMZL patient (several years) and this past year underwent IGG infusion therapy. (My numbers were in the 400's, I believe 1000 - 1200 is normal.) This is the number my oncologist watches carefully. This is the only care I receive other than regular visits under the wait and watch protocol. it seems SMZL is quite a spectrum of symptoms and therapies! Laurie

Hi Kayak, hoping @elainejarrett will weigh in to share some naturopathic knowledge.

My IGG numbers also in the 400s. Immunologist says since I'm thankfully not getting illnesses will let it ride for now, and that IVIG or SVIG will be the cure for that issue. Were you getting illnesses and that's why you started treatment? How are the infusions going for you? You do them in the clinic or in-home? They working well?

Yes, quite the spectrum! Thank you for connecting, Lila

I was diagnosed 2019. I have been trying the naturopathic way with certain supplements and going for weekly ozone and vitamin C IVs for 3 years. I did do ozone sauna for a year also. I stopped as it was all getting too pricey. I continue with the IVs. My labs are holding steady.

Elaine, that is encouraging to hear. Steady is great. I also believe complementary therapies can make a difference. Yes they can get expensive. Thank you for sharing some of your therapies. Did you try the ozone IV or just the ozone sauna? Am researching both. Thank you, Lila