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

Hi SMZL friends,
Just had my 5th Rituximab infusion and it went smoothly! Yippee!
I had violent rigor reactions in #1, 2 and 4- so for #5 we used all of the pre-meds, as well as increasing the drip in small increments of 50 ml. That’s as fast as my body will tolerate.
It was difficult to convince my doc that the standard infusion protocol needed to be adjusted for me. Why???

Sadly, scans and labs after the first four rounds did not show the response we hoped for. Fingers crossed that four more will get me to a better place.
Next step- add chemo.

Please share which chemo you started with, and your experience?

Hang in there!

I experienced rigor with my first infusion of retuxin….we tried again one month later and I had horrible adrenal back pain….I am now on 4 pills of Brukinsa a day, no more retuxin…have to say though my spleen did go down a bit with the little retuxin that I did get…good luck!

Thank you. Yes, I listen to my body and veg out. Showers totally wipe me out. I appreciate your words of encouragement and know i got this it just will take time. Thank you for sending link i will check it out. Thank you

Yes radiation was localized. I found a lump under my arm. It was in my axillary node and 2 others. The biopsy showed partial mzl in the axillary node. 12 radiation treatments. Oncologist did a pet scan in August report came back fine, as per report. Foumd lump in October and stat mammogram and ultra sound ordered. Radiologist that viewed both said i had uptake in that area in August. Word of advise,have your doctor show you the pet scan image. I had never asked to see image and could clearly see uptake. Another lesson learned always ask ask questions, look at the image results and go over those with your doctor.

I’ve experienced the frustration of having a dismissive doctor too. It’s an incredibly discouraging situation not to be heard. So I’m happy that you were able to get the help you needed!
Now you’re in full recovery mode! From experience with cancer treatments it just takes time to heal — mentally and physically. It’s a challenge to be patient when you’re just bursting to get back to normalcy. ☺️ But there’s no rushing this step…it’s slow and steady for the win. So, for the time being, you get a free pass to veg out. Your body will tell you when you’ve overdone!
Walking is a great way to build stamina by slowly adding a few more steps, blocks, miles, daily. Keeps the blood moving, endorphins flowing and heart pumping!

I did a quick search for references to SMZL. Here’s the link on Connect for these discussions if you’re interested. https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Smzl#discussion-listview

Don’t hesitate to pop into any conversation! Let me know if I can help you with anything else, ok?

Thank you for welcoming me. Smzl is so rare it's hard to find others with the same diagnosis. Yes, very crazy story regarding my spleen I kept telling my then oncologist something was stuck. I often thought about sending him a message but figured since I was seeing another oncologist in the same group he got a mouth full of feedback. Since then I moved onto a new group. If a doctor doesn't listen to me I find one that will. I know my body and very well and I advocate, research and if I feel something is wrong I voice it.
The radiation was made me exhausted. Thank you for the encouragement and advise on how to easy the symtoms. My body has been through a lot. Rutiximab treatment, spleen removal and radiation. Great to connect with you. I appreciate it.

@audreyzm While you’re waiting for other members to reply about a 2nd diagnosis for MZL, I wanted to welcome you to Mayo Connect. I’m sorry you’ve had a double whammy with this disease after having such a positive response with the Rituximab for the first diagnosis.
But what a crazy story with your spleen! Kudos for pushing to get answers for that unexplained severe pain. You know your body better than anyone else and it was telling you something was definitely not right! I have to know, did you ever report the findings to the doctor who was so dismissive about your pain?
I hope you recover quickly from your radiation treatments. The fatigue should slowly disappear within a couple weeks. Rest often, eat healthy proteins, fresh fruits and veggies high in antioxidants and drink plenty of water daily…aiming for at least 64 ounces. Was the radiation localized?

Was diagnosed with SMZL in 2022. Was treated with rutiximab with complete response however still had severe pain kept telling doctor something was stuck. Doctor dismissed me. I found rare cancer center near me and they recommend a splenectomy. They removed in march 2023 spleen was stuck to my diaphragm. Was recently diagnosed with nodal marginal zone lymphoma and just completed radiation. Has anyone had a 2nd MZL diagnosis. The radiation fatigue is the worst.

@monicalu2626 Thank you - I feel quite fortunate actually. I realize that it could be so much worse. Regarding 2nd opinions, I had a few docs at Mayo trying to figure things out. Since I had several issues it took some time (5 months) to determine what was going on. The cancer doc I started with, before I decided to reach out to Mayo, also struggled.

What I wonder is, if it ain't broke why try to fix it? I'm OK with where I am now on Z. It's just unclear in what way Ritux or Obin will improve my situation, and if there are any downsides.

Hi @mrgreentea,
I’m sorry to hear you have so much going on. Have you obtained a second opinion?My labs have anomalies and crossover between different lymphomas. It’s crazy.
Rituximab appears to be a front line drug for small B cell lymphomas. Most people only have a reaction during their first infusion, if any. I’m going to stick with it. I just need to keep taking the pré-meds (most people don’t need them after the first treatment) and they will slow down the drip.
It is making a difference in my blood counts, and I’m suffering much less fatigue and bone pain. Yippee! Don’t be scared off by the reaction possibilities if you want to give it a try. It has been around for about twenty years.
Sending positive energy!