Welcome @helloitsme, so glad you reached out to this group. I’m also glad to hear you’re headed to Mayo in Phoenix. It was my “home away from home” every eight weeks from April to October 2021, and I just can’t say enough good about it. I went specifically for PRRT treatment for unresectable tumors in my stomach and some small ones scattered about my body. I’d had ten inches of my small intestine removed in 2018 and eleven inches removed from my large intestine in 2019. These were tumors that never showed up on CTs, but then caused blockages. Although I’ve been on Octreotide shots every 28 days since April 2018, they were mainly designed to control the symptoms (especially the diarrhea and flushing). So it was time to seek further treatment.
I would fly down from Albuquerque on Tuesday morning, visit with the docs and/ or nurse practitioner in the afternoon, spend a good chunk of the day Wednesday receiving the treatment, go out to dinner that night with my sons, go back Thursday morning for my Octreotide shot, then fly home. We always stayed at the Hampton Inn near the hospital as it was reasonable with special hospital rates, they offer breakfast, and they have a shuttle to the hospital.
But I’m wondering if you looked into MD Anderson right there in Austin. They, too, offer treatment for Neuroendocrine tumors. I’m not certain if they have PRRT.
I continue to have issues with diarrhea (thank you Imodium) but I view it like any other chronic illness - you control it and live your life. When you can, start an exercise routine as it will help mentally and physically. You’ll also figure out what you can eat without setting your stomach off, and eat nutritionally. Remember, these are slow growing tumors.
Good luck to you and please continue to reach out and keep us updated.