Hi Glen, the AFP test is not a good marker. Usually when tumors are present it is over 400. Most hep docs do not look at AFP alone, but pair it with imaging such as ultrasound or CT scans. If you haven't had imaging in the last 6 months, yo shold ask yor doc to do that.
Glen, keep appealing to insurance. Did Santoro order imaging for you?
Glen, I am so sorry you are having so much trouble. I know it is scary. I really think your best bet now is to get in to see a transplant evaluation team. That does NOT mean you are ready for a transplant. But, they will know how to keep you the healthiest and know which treatment meds are the best for you. Some of the new DAA's are not approved for people with very late stage disease. Ask Dr. Santoro to get you in to see someone who can help you.
Ok, let us know what Dr. Hoteit says.