Want to connect with others with Splenic B cell Marginal Zone Lymphoma
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.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Colleen. The rituxan treatments were 1 per week for 4 weeks and actually was in Sept of 2022. My spleen did reduce in size. When people ask how I feel, my response is... "Medically and Age adjusted, I feel great."
But really, I do feel good and only have a bit of continual spleen discomfort.
At times I wonder what normal would be if I had never had any of my cancers.
Thanks for checking.
@jam1962, did the treatment reduce the size of your spleen? How are you feeling now?
Correct, treatment was 1.5 years ago and at that time my spleen reduced in size and blood tests moved to normal ranges. Gradually, now my spleen is larger, platelets are slightly under normal levels and lymphocytes are above normal. I have not really changed my diet in the past 1.5 years other than eat a bit more because I don't get full as fast. I eat some sweets but not a lot. Probably the biggest change I've made is taking more vitamins. I can't say if they help or not, but realize my immune system is less than optimum. No one can say if my two lung cancers and a rare type of skin cancer is related to my weak immune system but hope the vitamins give the old immune system a little help. I'm 72 Good luck to you.
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