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

Renee,
I've lost track of some posts and replies but wanted to check in and also ask a question of you and the group. I had great results from my bloodwork of late last year, and just had another checkup. Unfortunately, my bloodwork coincided with the trail end of a cold and my numbers were slightly elevated. (I had tested negative for Covid but had sore throat, slight cough, and tiredness.) My ocologist mentioned an ivig infusion, telling me he has a "low threshold" for that procedure. My proteins aren't at scary levels but I could tell he was suggesting I could have the ivig to bolster my numbers. We left it that if I have recurring colds or other symptoms I should have it done. I know that I've been trying my best to live healthy and manage my immune system without any infusions, and that saying yes is acknowledging this is a cancer that I have little control over. (That's a tough realization for me.) However, I realize this is a resource I probably should take advantage of, especially with Covid still lurking. Can anyone offer insights about side effects or other issues with ivif? I am due for my second Covid booster - sounds like side effects are similar to covid shots - I always end up with flu-like symptoms. Beginning to dread that about every issue but think I need to buck up and deal!!! Hope you are well and your health is steady! Laurie

Theresa, here’s the link to more information about requesting an appointment at Mayo Clinic, either by self-referral or having your physician submit a referral http://mayocl.in/1mtmR63

If you have any questions about Mayo, I’m sure @scsimpson @stankent and @reneemp would be happy to answer questions.

All the best with your appointments next week, Stan.

Renee, Ok Thanks.
I have tests ( labs, CT, Bone M biopsy) there on April 12. Then Hematology and Lung Oncology appointments on April 20th. I hope you appointments go well and provide the help you are seeking. Update us following your visit.

I will be going to hematology and endocrinology. Thanks for all your advice.

Renee, I'm not sure if you are familiar with the Mayo Rochester facility. It is quite large, but there are many information kiosks and volunteers that are quite helpful. Just park in the Damon parking ramp ( or the Graham ramp) , take the elevator to the sub level and follow the signs to your appointment building. Cancer care is split into many specialties/departments and each has their own check-in desk. If you're willing to share, which department(s) will you being seeing?

I know what you mean about the increase of awareness of ‘normal’ movements. I am discovering that sometimes when I do yoga I end up in pain so I have been experimenting with taking a day off and not doing as many bends. It’s such a trial and error process.

Glad to hear you have 6 months until some more tests.

Thanks for sharing and enjoy the day. Renee

Thanks for the tips. I appreciate you taking the time to share your experience and advice. Renee

Theresa

You are welcome. Anytime you have questions don't be afraid to ask. Everyone here are always ready to help. Good luck with your journey.

Steve

thank you for the paper, it was very encouraging about treatment. I am now due back for repeat studies in 6 months and during that time I hope to settle on a second opinion professional. I am certainly considering the Mayo Clinic. My local oncologist has put the ball in my court at the present. I am slowly developing a self care routine with activity and connections that increase a sense of well-being, but I'm still trying new things. It's a balancing act between denial and obsession I'm getting better at.

I just got a reprieve for another 6 months before I return for repeat studies. I am happy about this but wonder sometimes if I should let go of resisting treatment. Especially when I hear you had no side effects! Bravo! That is encouraging, thanks!