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

@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?

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.

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?

Hi everyone, I’m hoping you can please share about pain? After each of my four initial Rituximab infusions I experienced burning bone and nerve pain in my legs. Because my bone marrow is quite involved, I expected some pain, but not to the extent that it wakes me up.
Have you had this type of pain? If so, what helped?

Also- I’m wondering if anyone experienced the infusion reaction rigors? Was it just during your first treatment? Or were you blessed to have no allergic reaction?

Thank you in advance for sharing!