Aug 01, 2011 - 7:24 am
We are finally back home in Ohio, after moving our son from DC back home. Not an easy thing as giving up his independence is as hard for him to accept as the diagnosis.(age 34, single/no kids, dx 4/13/11; resection 4/18, only removed enough tissue for biopsy; completed 5 weeks radiation/Temoar 6/23).
He has declined significantly since the biopsy: has confusion, needs assistance with about everything, including walking as his balance is bad; fine motor decline. Speech slurred and sometimes trouble finding the right word. Plus he's insulin dependent diabetic.
Before leaving Virginia, we received a copy of his records to take to his new docs in Columbus Ohio (The James at OSU...great place). Interesting reading the docs comments versus what we've been told. One thing that is confusing is the exact term used to describe his dx. The radiation doc says "high grade glioma". His oncologist had said "astrocytoma III but acting like a IV", but her notes say ""glioma, mixed". I had asked her during an office visit if it was GBM and she said yes. The new doc at OSU used the term "astrocytoma." It probably doesn't really matter, only that at OSU, they're thinking of not giving him round 2 of Temodar (5/28) The 28 day regimen of Temodar made his blood counts plunge three weeks later. The OSU doc is concerned that his bone marrow can't handle anymore T. So instead, considering putting him on bi-weekly Avastin infusion. We won't know for sure until our appointment on 8/8. However, the nurse there said that typically, Avastin has been approved for GBM and not Astrocytoma, but she would lobby the insurance company to pay for Avastin for AA.
Question: is it common to interchange terms like this? And, has anyone had problems getting insurance to pay for Avastin for AAIII?