@ceefer
I see that you have obtained a second opinion. Was this with a NET specialist? There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63).

If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

Often, when a medication is not approved by insurance, the doctor's office can contact the insurance company to request approval for an alternative medication that will be more effective. Has your doctor's office talked with your insurance company about getting the Creon approved?