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

Good morning, Renee. I see your BMBX is coming up this next week and want to send good wishes for a great result. I’ve learned not to say, “positive result’ when getting a bone marrow biopsy. 😅

Just remember, having a ‘treatment’ of waiting can be a good thing, though I know it’s unsettling and much like waiting for the other shoe to drop. You’re a survivor, having fought bigger battles in the past! ☺️

Let me know what shakes out with the biopsy. Did you opt for the sedative?
( Ask for the Lorna Doone’s post op. There used to be Mimi Ritz crackers with cheese but now those are gone and replaced with Cheezits. Not the same…sigh. 😂)

Stan, I’m glad the lung resection is behind you and the tumor was relatively small. I will be praying for your continued good health.

Thanks for the good wishes. I am going to be sedated for the procedure. I so prefer the drugs over being anxious. I am happy to be in the waiting zone and am working on my mindset as I transition into a new normal, new language and new knowledge. I am in the learning curve zone.

I appreciate you and this site. Enjoy the day. R

Am a Newly diagnosed SMZL’er.
My journey started when my new primary discovered my enlarged spleen which sent me through the normal path, ultrasound, blood tests, Hemotologist, bone marrow biopsy, initial diagnosis, referral to a Mayo dr that agreed with findings of SMZL and treatment process.
I do not react well to medicines ….COVID 19 vaccines….especially so am a bit wary of
Doing the Rituxim, even tho it seems to be the best route to get my spleen size reduced and
Numbers Up.
I will also have 4 treatments ….. wondering about just letting them doing infusions thru IV or would the port be the way to go?
I feel good now and am hoping for a good outcome!

Thanks for any words of encouragement!

HTRMoon

Hi @pkh, @stanleykent @cdwilm27 @reneemp and @kayak4me share your same diagnosis of SMZL and have current ongoing conversations. I’m sure you’ll find you’re in a community of caring and encouraging members in our Mayo Connect forum.

I’ve had plenty of experience with Rituximab/Rituxan. Do you already have a port? If not, there’s no reason to have one implanted for the infusions. They’re easily done via IV in the hand or arm. Then the IV is removed and you’re on your merry way.

I know you’re concerned about allergic reactions to meds. Just to let you know that it is not at all unusual for most people to have a slight reaction to the initial infusion of Rituximab within the first 1/2 hour while getting the infusion. It’s nothing to fear nor do you have to be concerned. I had a reaction that came on very slowly and took me several minutes to realize this was probably what I’d been warned about…and “warned” is too strong of a word. My doctor and my nurse made me aware of the possibility so that I wouldn’t be worried. And I wasn’t. It was handled so quickly and efficiently that it was a non-event.
Nurses in the infusion centers are well prepared for this and often, with the instruction of your doctor, you’ll be given Benadryl and Tylenol about 20 minutes before the first infusion. If needed there will also be Benadryl or a steroid injected into the line.

The rate of flow has a lot to do with the reaction, so the first IV treatment is generally given very slowly over the course of 1.5 to 2 hours. After that, the IVs go much faster and you most likely won’t need the pre-meds.

You’re a Mayo Clinic patient…which Mayo Campus will you be using for your infusions? Or are you doing these in a clinic closer to home?

Thank you for getting back to me.
I was fortunate to meet with a doctor that has retired from Mayo however is doing consultations in Central Minnesota. I will be doing
The treatment in Brainerd. Love Mayo, however with Winter coming on, having to travel 150 miles each time for treatment it just does not always work.

So nice to hear that a port is not a necessity ……. I understand if I were to need further/longer treatment it would be best.

Being from Wisconsin, I can completely relate to travel being weather dependent in the winter! It’s great you have a clinic locally that can administer the IV’s.

The IV’s are really simple and painless. Just time consuming, so make sure you take along something for entertainment and maybe a snack. Most IV centers have televisions in the rooms and wifi connections so you can take an iPad, cell phone, etc. I used to pack a little lunch and a water bottle. The IV units are on wheels and battery operated so if you need to get up and walk around, stretch your legs or use the restroom you’re completely mobile.

When is your first infusion?

Will be seeing my dr. Tomorrow and making final arrangements. Kind of shooting for beginning the first week in Jan…..may change my mind and get the first infusion done with in Dec. I am rather undecided as to what I am doing…can you tell. 🙃
Nurses so far have been very accommodating and helpful.
Drs have told me this lymphoma is slow growing and I do not need
To rush into things yet this would be good to get it over with.

Thanks for your help.

Just returned from follow up with first hematologist dr., he has told me I do not need to rush into treatment so will not be scheduling until after the CT he decided he wants along with labs again. So pretty much, things are in ‘wait and see’ mode.
I feel just fine and am happy I do not need to rush into anything. 😌

Yes! This is wonderful news. After reading your previous post with the comment about this being a slow growing lymphoma I was going to ask about your blood numbers and if ‘wait and see’ might be an option.

Other members with your condition ( @reneemp @kayak4me) are in the same holding pattern. It’s a postive place to be, yet challenging with not focusing on the what ifs. Don’t let that rule your life!
Stay active, enjoy every day to the fullest. Get out and walk, exercise, try new experiences, work on hobbies. Nature is healing! You live in central Minnesota. It’s gorgeous and just begs for being outside.

What activities do you enjoy?