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

Hi, my diagnosis involved bloodwork, a full body X-ray (originally thought I had Multiple Myeloma because of a heavy Lambda light chain and some other anomalies), a Pet scan (where we saw that there was no node involvement), and a bone marrow biopsy and aspiration. My doc still says that we may never have an exact diagnosis but the majority of my data indicates SMZL.
Hope you are finding your way.

Hi Andrea,
Thank you for sharing. I’m wondering if doing Rituxan again was discussed as an option? Do you mind sharing why you chose Brukinsa?
TIA

Hi Lori, thank you for the quick reply.
Hello everyone!
It’s been difficult finding others who are living with SMZL. It’s sure a marathon, vs a sprint…and a bit of a mystery. I did read thru many of the posts. Very helpful.

I completed four weeks of Rituximab infusions on Jan 31. Unfortunately, I had a reaction during 3 of the 4 treatments- very scary! Thankfully the nursing team was always prepared and compassionate.
That said, I’m on a break for the month of Feb and will start up again on March 7. Depending on labs and scans, it may be that I’m starting maintenance every 2 months. Fingers crossed!
If not, we’ll figure out what’s next.

When I was finally diagnosed, after two years of trying to improve my anemia, unfortunately, my spleen had doubled in size and 70% of my bone marrow was involved. The fatigue!! and shortness of breath!! limited me to any kind of activity for only about 15 minutes at a time.
(my job requires a lot of travel, and often 15-20,000 steps a day)

Luckily, my system seems to be responding to the R.
Thanks for the welcome!

Hello,
I was treated for SMZL in 2014. I had 4 rounds of Rituxan followed by 2 years of Rituxan maintenance. I have since relapsed and recently started taking Brukinsa every day.
~ Andrea Scheingross

monicalu
Hello... I'm glad you have reached the SMZL group.
Welcome and if you would like, share your experiences and diagnosis. As well as any questions you may have. There is a lot of information in the previous pages of this forum. As you will read this and what interests me is that SMZL sure seems to be different for everyone. The symptoms, tests performed, test results, diagnosis, and treatment sure seems to vary quite a bit.
Wishing you the best...

Hi @monicalu2626 You found the perfect place to land in Connect to speak with members @stanleykent
@jam1962 @elainejarrett and others such as @andilynn @scsimpson @trevtwin @grand4 @caroldk @kayak4me @cdwilm27 @reneemp @pkh @theresad2 who have been diagnosed with SMZL. It can be so comforting and helpful to be able to speak with someone who is walking the same walk.
There are other discussions too, such as this one where you can join @trixie1 when she asked about:
Any new treatments for SMZL? What do you take for maintenance?
https://connect.mayoclinic.org/discussion/wny-new-treatments-for-smzl/
If you’d like to tag someone specifically just add their @name or click on the blue reply box in the comment you’re reading to reply to that person. They will get notified if their notifications are switched on.

Are you currently in treatment for your SMZL?

Hi Colleen, I am recently diagnosed with SMZL in November 2024. Is there a Connect group I may join please?

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.