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

So happy to hear you got through it all and fingers crossed it works for you. This gives me hope. Thank you.

Elaine,

I just completed my 4th and final infusion of Rituxan. I had a reaction within the first 3 min of the first infusion, which was apparently predictable due to my excessively high lymphocyte count (27,000). They gave me meds and slowed the drip down and I was able to get through it…8 hrs later. The remaining treatments were fine but I had some side effects - nothing major. Mainly some body aches and discomfort, one day of flu like symptoms, and occasional low grade nausea. Also, I noticed within 36 hrs of the first treatment that my spleen has shrunk significantly. Furthermore, my WBC and lymphocyte counts have normalized. I’m meeting with my hematologist on Wednesday and I’m hoping he continues the good news. :). Yeah, this has been very difficult, but I’m trying my hardest to be in the present. The silver lining for me is that my wife and I are closer than we’ve ever been and I’m appreciating things so much more than previously, especially my two kids.

How did you do on treatment? Did you have any side effects? What symptoms did you start to experience? Are you feeling better now as I know there is no cure for what we are dealing with but, hopefully, there is some light at the end of the tunnel. It is a scary thing to be told you have cancer.

I just want to send you a big hug. I am not sure why you have to wait worrying. It is the worse thing in the world. Best of luck!

Hi Colleen, thanks so much for the connections. I may need your help in figuring out how to add them or connect with them.

Regarding meditation, I use the calm app. Tamara Levitt’s “21 days of calm” is a great place to start!

Hi @trevtwin, along with @elainejarrett and @trixie1, you can also connect with @cdwilm27 @reneemp @stankent and others who have experience with SMZL.

You'll notice that I removed your personal email address. Mayo Clinic Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

What kind of meditation do you do daily? Do you use an app that you might recommend?

Elaine,

Thanks for sharing! I’m sorry you’re going through this, but it’s amazing that you are not symptomatic. I’m still new to this and know that every person has a different story. I was very symptomatic and knew something was wrong and thus, the need to move quickly and treat. It’s a terrible thing what this can do to you mentally. So far, for me, daily meditation has been the most helpful for keeping me present and happy. Obviously, having strong support around you helps too. I think it can get frustrating when people try to relate on some level and fall WAY short. This is one of the main reasons why I wanted to meet others like me. Connect by private message if you would like to communicate more privately.

I have posted before. Mine showed up on labs as platelets were low. Platelets started dropping, then spleen started to enlarge. Blood work end 2021 was a red flag. Platelets really low, spleen quite enlarged, IGG very low and WBC and Hemoglobin out of wack. In January 2022, bone marrow biopsy/aspiration, CT Scan and other urine tests etc showed I have Low grade B cell Splenic Marginal zone Lymphoma/Leukemia - Lymphoproliferative Disorder. I am on a watch and wait and not receiving treatment until symptoms start. I have been told that feeling crummy, night sweats and fevers are the first signs. So far so good. It is a huge worry though.

Hello, I’m 45 and have been recently diagnosed with SMZL. Literally getting my 4th Rituxan infusion as I type this. I’m hoping to meet one of the rare few who have been diagnosed with this. I look forward to meeting you!

Trevor

I was diagnosed with splenic marginal zone b cell lymphoma in January of this year. I am currently sitting here getting my 5th round of chemo....one more to go. Don't know what will happen after my 6th round in June except more scans