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@pkh

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

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Replies to "Am a Newly diagnosed SMZL’er. My journey started when my new primary discovered my enlarged spleen..."

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?