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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (346)Comment receiving replies
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?
Replies to "Hi @monicalu2626 You found the perfect place to land in Connect to speak with members @stanleykent..."
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!
Connect
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