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

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?

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...

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

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!

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, 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 Monica,
I didn’t want to do Rituxan again, because I believe it has caused me chronic problems. My immunity never recovered and I now must get immunoglobulin infusions every four weeks. That only helps with IgG. I have low IgM and no IgA. I believe the lack of IgA has resulted in chronic digestive problems…lactose and fructose intolerance especially.
So, I opted to try Brukinsa. It’s too early yet to tell if it will work for me. I like the ease of taking a pill at home.

I’m sorry you are dealing with this. I’m learning about the immunoglobulin “world” which has never been on my bucket list. I’m not sure if 2 years of Rituximab infusions maintenance would be good for me, mainly because of the scary reactions I’ve had, but also because of information like you are sharing. Please let me know how you do with the Brukinsa? My doc has mentioned it.
Sending energy for a good outcome!

Hi @andilynn - one comment - I heard that some ppl give themselves subcutaneous IgG shots every week or two. They mention 2 benefits - they can do it at home, and it evens out the IgG over the month. This is what I will try to get when they say I can get IgG. It's too bad that IgA replacement therapies don't exist yet (I have low IgA). I did see that there is research going on in this area, so fingers crossed. Finally, I'm on Brukinsa 8 months so far, no issues yet.

Hi, thanks for sharing! I’m wondering if you did Rituximab maintenance, or are you doing Brukinsa instead? TIA