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

Thank you for responding back. So if I am understanding your timeline, your spleen and blood tests are slightly under the normal range after 1.5 years? I am so happy to hear you are feeling well and no new symptoms! After your 4th infusion did you change your diet to he more protein and less sugar ? Also, may I ask how old you are? I am praying for you to feel well and good results!

jam1962
Just an update.
That was March of 2023 that I had commented and I had the 4 rituxan treatments in Sept 2022 At that time I felt good. My spleen has reduced in size, Lymphocytes were in normal range and platelets were also within normal range. I see the hematologist every six months and my recent October visit continued to show everything is slowly progressing back. The spleen is larger, platelets and lymphocytes are now out of normal range. But I feel good and only have a continuous tiny bit of spleen discomfort. The hematologist is pleased that I'm feeling well and that I have not had other symptoms and the SMZL is currently on a slow progression. So I'm on watch and wait and will see him again in April.
Thanks for the comment and good luck to you.

Stanley Kent, your symptoms were like mine. I ate 3/4 less food, never really hungry, felt enlarged spleen, had night sweats and fatigue. Since 4th treatment of Rutixmed in June 2024, I have gained 29 lbs back and constantly wanting carbs and sugar. Originally from CA, moved to Spokane WA 7 years ago. Now in Arizona

I have non Hodgen’s B cell Lymphoma. My spleen was up to 21 cm. Treated with Rutixmed for 4 infusions. Cancer was/is predominantly in spleen and partial bone marrow.

Thanks Elaine for sharing knowledge. Reading up on Monicor now. Having a naturopath is helpful. Do you mind sharing some of the supplements they recommend besides IV Vitamin C? I’m taking the usual vitamins plus added turkey tail and colostrum for immune. Just consulted with nutritionist too if you’re interested. Lila

I still do ozone and vit C IVs. Have done for about 3 years now. I added ozone sauna for about a year but it was getting expensive so I stopped the sauna. There is something else out there that I have now added. It is an AI machine called Monicor.

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

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.

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

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