Have your doctors discussed having Lutathera treatment? My husband has Stage 4 NET that started in the outside of his small intestine, then metastasized to his liver (inoperable) and was on two shots of Lanreotide a month. This worked well for 3 years, but then metastasized to his lymph glands, pancreas and lungs. Our Oncologist suggested he consider Lutathera treatments as it can shrink, or in some cases, eradicate small tumors & can extend his life for 3-4 more years on average. There are only about 20 hospitals in the US that are FDA certified to provide this treatment & the Mayo Clinic is one.
He elected to have this intense radioactive treatment (4 treatments every 2 months) and has had 3 of the 4 treatments to date, fortunately without any negative side effects. After receiving the treatment, he gets a follow-up Lanreotide injection and another Lanreotide shot 28 days before his next scheduled Lutathera treatment.
He will then have a PET DOTATATE scan about 1 1/2 months following his last Lutathera treatment & we will see how effective the treatment was. Following this, he will have monthly Lanreotide injections in hopes of maintaining & controlling the speed of tumor growth. We are hoping this will give him a good quality of life for several more years. I’ll let you know after his PET DOTATATE scan in May how successful the treatment was.
Good luck on your husband’s journey with this rare NET. Stay strong & try to enjoy every day.
Mary Davis