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.