@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but it’s important for you all to remember that they are slow growing and people live many years with them as they are treatable.
I had eleven years of misdiagnoses before I had a blockage in my small intestine (March 2018), and a 2 cm carcinoid tumor was found. (There went 10” of those intestines.). They immediately started me on Octreotide LAR. Then in July 2019 I had another blockage - this one in my large intestine so there went 11” of that intestine. In addition to these tumors, there are several scattered around my body - including one in my stomach that is not resectable. So in April 2021 (following a year of the pandemic that delayed my plans), I started PRRT at Mayo in Phoenix.
Following my first treatment, I had a reaction they had never seen before and ended up in the ER with uncontrollable vomiting and diarrhea, and an episode of vertigo which caused me to fall. So the team at Mayo decided to halve the dosage, which worked much better. That’s not to say I didn’t have to deal with side effects such as diarrhea, fatigue, and nausea, but they were controllable.
So fast forward to March 2022 and my GA 68 scan showed the disease was “stable” with no new growth and some decrease in size and activity. Then in July this year I had another scan that continues to show stable disease with no growth. It’s now been 2 years since I completed treatment. I continue to be on Octrotide LAR 30 mg every 28 days. I usually have to take Imodium for a day or two afterwards or if I eat something that doesn’t agree with me, otherwise life is pretty normal (for someone 74 years old!). My next scan is scheduled for January 5th.
I believe the PRRT has stabilized my condition, and fingers crossed it will continue to do so. And yes, I would definitely recommend it.
I send best wishes as you all go down this journey.