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

Theresa, Yes, am sure looking forward to spring and summer, seems like it is finally getting here. It is interesting that my WBC is going a different direction. Maybe SMZL presents itself differently for different folks. Am curious as to what others have experienced while they are watching and waiting. I think you were contemplating a second opinion,..... were you able to contact anyone? Stan

Hello, I've not written in a long while. Lots happening in my personal life.
I was diagnosed with SMZL in Oct 2021. My spleen was 3 times the normal size, I had terrible night sweats and my H&H was 9.9 and 32. Bone Marrow biopsy revealed cancer cells were present there as well.
I had 8 infusions of Rituximab over the course of 10 weeks. My labs were nearly all within normal limits on December 20th and again on 1/21 as well as my spleen was nearly normal. I did have another BM biopsy in late January which revealed the T-20 cancer cells were gone, but there were some T-19 cells that were present, non cancerous at this point.
I did have a 2nd opinion with Dr Javier Munoz at Mayo on 12/7 and he thought the current course of treatment was correct with Dr. Salganick at Ironwood Cancer center.
My next appointment is 6/28. However I did see Dr. Salganick on April 19th regarding the return of some light night sweats. He stated he did not want to go to the next level of treatment if I could live with night sweats on and off. I agreed with this. Waiting to see what my labs reveal in June.
As for my personal life; my husband of 19 years and I have Legally Separated, sold our home and he has moved to Florida and I am now in a new house in Peoria. I am trying to continue healthy eating, exercising and a Zen attitude. It is strange and makes my head spin when I consider all the changes in my life since the diagnosis in October. However I do feel that I can focus on my wellness in my new environment.

Thank you for sharing your journey. How encouraging to hear the T-20 cells were gone and the T-19 were noncancerous! The spleen is such a remarkable organ to have regained it's former size. My spleen size is my most bothersome symptom. My diagnosis was much earlier in 2019 but of course everybody's course will be different. Treatment has been offered but not definitely "required" at this stage so I continue to postpone Rituximab. Did you have symptoms with the infusions? I am currently in an acrimonious separation after 35 years of marriage and honestly that is the silver lining in the cloud of diagnosis. It forced me to reevaluate my life and I am so much happier separated. I do believe focusing on our own mental, physical and spiritual health is the wisest choice I can make with this journey. Best wishes for your lab results in June, the watch and wait is becoming easier but never exactly comfortable.

Hi Stan, I found this study https://pubmed.ncbi.nlm.nih.gov/23484698/ indicating that in their small group of 19 newly diagnosis patients, WBC were high in 5 and low in 6. So counterintuitive to see such a contrast. Other factors seem more consistent. The good news is 100% response with Rituximab! My local oncologist has recommended a lymphoma specialist at UVA medical center in Charlottesville, VA. I will probably give that a try at my next follow up in August. My doctor has not mentioned a repeat bone marrow biopsy at any point which does make me wonder; I see so many mentions of them here. I want to be a diligent participant in my own care as far as possible. It's so helpful to hear from others who have this rare diagnosis. Thanks for the interest and encouragement!

cdwilm27. It was nice to hear from you and that your treatments went well. You've had a difficult year and hope your next reports are positive. This forum is interesting as one can relate to many things mentioned, yet each person is unique in their timeline, symptoms. and successes. Thanks for checking in.

I was diagnosed in Nov 2019 with the startling discovery of NHL, B Cell in my spleen. My spleen had grown to twice its normal size and I received 4 rounds of Rituxan in January 2022 and my numbers have come down. My next scheduled follow up is next week & prayers that it is still reducing. (However I feel part of my stomach is growing again). Any current posts or updates on this? Thanks

Welcome, Sally. Yes, we have quite a group of members talking about splenic marginal zone lymphoma (SMZL) also called Splenic B cell Marginal Zone Lymphoma. I moved your post to this active discussion thread in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/)

- Want to connect with others with Splenic B cell Marginal Zone Lymphoma https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/

I did this so you can connect easily with @scsimpson @theresad2 @caroldk @waltera @kayak4me @reneemp @stanleykent @cdwilm27 and others who have experience with enlarged slpeen, Rituxan and living with this cancer.

Sally, waiting for your next follow-up is hard. I join you in hoping that the numbers are still on the downward trend. When was your last Rituxan treatment? What makes you feel like your stomach is growing again?

Hello Sally! It’s so important to be able to talk with others about SMZL especially since it’s fairly rare.

My spleen is holding to its size at diagnosis and I cannot help much with drug regimens or surgical questions, but I think it’s important for our community to stick together!

I can hear the concern in your message. It took me some time to come to grips with the fact that I have a cancer - often referring to my doctor as my hematologist, not oncologist. Eventually I got over that 😉

My newest issue is watching my IGG proteins and after bloodwork in July may get an infusion to boost those #s to better support my immune system.

Write any time you want to chat. Wishing you well and hoping for encouraging news for you!!
Laurie

Hi Coleen, thank you so much for moving my post over to where it should reside! My last Rituxan treatment was end of January this year. I had 4 of them, each a week apart. I am hypervigilant about my torso changing shape now (my cancer doc said my spleen was all the way down to below my belly button when she saw me in January. It had shrunk a great deal, but I swear I have a "tire" now below the spleen region. Again, I am a bit phobic about any changes, since it was overlooked by everyone that performed an exam on me for 6 months.

Hi Laurie, thanks for your concern & I too was in shock for some time about being diagnosed with SMZL. I joke with friends that all the years of clean living has caught up with me and I should have been drinking a lot and smoking and eating lots of fried food and not exercising! When you say your spleen is holding to its size what do you mean? Mine grew to twice its normal size before my 4 rounds of Rituxan started. Thanks Sally