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

I am a 70 yr old active female who began having night sweats about 3 months ago. I went to my PCP on 8/16, she did CBC and my result was a referral to an oncologist. I have had numerous labs, a bone marrow biopsy and a CT of my Lymph areas. I was given the diagnosis of Splenic Marginal Zone Lymphoma and was recommended to start IV treatment with Rituximab on 10/14. Also of note, my spleen is twice the size it should be.

Hi and welcome to Connect. You didn’t actually ask a question but my guess is that you’re wondering about your new and unexpected diagnosis of SMZL. Getting news that you have cancer is something no one wants to hear.

You have a rather rare blood cancer in the Non-Hodgkin’s Lymphoma group. It’s a type of B-cell lymphoma that affects the spleen. But the good news is that it’s slow to develop and responds pretty favorably to Rituximab which you’ll be starting in a few days.

I’m sure you have some some questions about your infusions coming up. Rituximab or Rituxin is not chemotherapy. It’s an anti inflammatory drug that targets the overgrowth or proliferation of lymphocyte B Cells in your marrow. I’ve had Rituximab infusions for a different situation requiring my B-cells stop acting like a gang of thugs in my body! The 4 infusions worked really well and did the job with no side effects at all.

The first infusion appointment the nurse will most likely slow the infusion rate which can take up to 2 hours or so, depending on the dosage. Often they administer some Benadryl or prednisone while you’re having the first infusion just to make sure your body tolerates it well.
It works quietly in the system over the course of months to keep the B-cells suppressed. Gradually your spleen should get back to normal size and hopefully your night sweats disappear.
While you’re having the infusion, it’s ok to take snacks along, a book, iPad, music, etc., to keep yourself amused. Usually an Infusion center will also have televisions in each room. You’ll be tethered to an IV machine but they’re battery operated or can be unplugged to let you walk around the IV unit or to use the bathroom.

I did a little searching to see if there were any good articles to explain your SMZL and found one from a lymphoma organization in the UK. This link is pretty easy to follow without going into all the technical details. I think you’ll get a better understanding of why your spleen is enlarged, and a bit about your diagnosis and traditional treatments.
https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/splenic-marginal-zone-lymphoma

I also found these links to several conversations in our Mayo Connect groups.
https://connect.mayoclinic.org/comment/167268/

I know this is unsettling news for you. But your cancer is treatable and was caught early. Do you have any specific questions you’d like answered?

This was so helpful, I have a great oncologist, but am seeking a 2nd opinion at Mayo to satisfy my nursing due diligence.

Knowledge is power! I’m happy you’re comfortable with your oncologist but as always, getting a 2nd opinion is adding to that knowledge bank. Having a nursing background is kind of a doubled edge sword, isn’t it? You either know too much and question everything or just enough to be overly concerned but in the dark, or don’t know quite enough. LOL.

Here’s a link to Mayo Clinic’s Request an Appt page. http://mayocl.in/1mtmR63

From there you can choose your preferred campus and give a call to set the ball rolling. The coordinator on the phone will give you direction as to what needs to be sent along with the request.

It’s not necessary to have a referral from you doctor but it can help in securing an appointment with all your information, tests results, etc., forwarded to Mayo.

This is the link for a physician assisted referral in case you want to go that route. https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient

Can I help you with anything else? Always here to listen if you need an ear or a shoulder. ☺️

Thanks so much for your assistance. I actually called in yesterday am and spoke to someone at the Mayo hospital . She took my info and I hand-delivered my chart to the Hematology Dept. Just waiting to hear what the next step is.

Whoa! I like the way you roll! You’re moving the earth under you feet!! Let me know when you hear back, won’t you? Good luck to you!

Hello cdwilm27
I am sure the diagnosis is a surprise and am wishing the best possible outcome in this difficult time. It is challenging, I understand.

I am 69, and in June of 2019, have been diagnosed with SMZL, Splenic Marginal Zone Lymphoma,. Routine blood tests were abnormal and in 2019, I went to Mayo in Rochester for further testing and diagnosis. Currently, am on a watch and wait status and have scheduled blood test/CT/Hematologist appointments every six months. As you, my spleen is enlarged.
Sometime in the future, the watch and wait will require further action.
I am curious as to your plan and expected outcome of the Rituximab. I am not questioning, at all, you or your physicians decisions . I am am only looking for information of current care plan experiences.
Or if anyone else with SMZL can comment, I would really appreciate their thoughts.
Thanks everyone

Hello, I will definitely report out on what the infusion experience was like.
My Hemoglobin and Hematocrit labs have gone down in the 6 weeks since I began this journey which is probably one of the factors in my doctor ordering this treatment for me. I am also curious to see Mayo's opinion of my diagnosis and treatment. Thank you for your comments and anyone else who would like to comment on their experience with SMZL.

I had my Rituximab infusion on 10/14 and 10/15. The nurse administered premedication of Benadryl and Tylenol prior to the infusion start. About 20 minutes into the Rituximab infusion which was started at a very slow rate, I began having shortness of breath and upper chest pressure. I was also very flushed my nurse told me. I was given O2 via nasal cannula and an IV cortisone of some sort. They restarted the medication again after about 15 minutes and the same thing happened although not to the same extent. At that point, they decided to give me some IV Demerol to assist with my infusion. I was only given a third of the medication on the first day. I returned the next day for the rest of the Rituximab and there were no side effects at all. The nurse who took care of me both days also gets Rituximab infusions so that was very helpful to have his perspective. My next infusion is on October 21st.

Well, you got one infusion out of the way, in a roundabout fashion! 😉 It’s pretty common to have a reaction with the first Rituximab treatment. My transplant doctor told me to it was likely so I wasn’t too surprised when it happened. But really didn’t know ‘what’ the reaction would feel like. About the same timeframe as yours, 20 minutes, I got a feeling like a piece of potato chip got lodged under my tongue in the back. However, I wasn’t eating. LOL Then the feeling moved to the throat and started on the other side. Ope…that was the aha moment! So I alerted the nurse, who already had 50 mls of Benadryl ready to inject into the line and prednisone if needed. But the Benadryl worked. I’d had Benadryl and Tylenol before the treatment too with the slow drip time. Anyway, it worked as we slowed it down even further. The subsequent infusions went off without a hitch. I expect yours will too. That was the only side effect I had.

I’m sure you’re relieved to have that first on out of the way so you know what to expect in the future, sans the reaction! We’ll hope that it’s a one-off.
It’s great your nurse has the same infusions. Makes you feel a little more comfortable, doesn’t it? ☺️