Hello everyone… we received this email from Deb Bernstein related to Ben’s UCSF consultation yesterday.
Please pray that God will comfort them during this time…
Hi Dave and Irene,
The results of our visit…it was a very long day, we weren’t seen until noon and ended up waiting in that office for 2 hours! We got home at 2 pm and were wiped out.
Below is a blurb of where we are at after yesterday’s visit plus a few other updates that are older…
With love,
Deb
December 4th, 2008
The Bone Marrow Test for primary Amyloid came back positive and shows Amyloid in his tissue and other organs and that his heart is extremely damaged.
He doesn’t qualify for a BM Transplant because he couldn’t survive the procedure based on the severity of his heart condition. He doesn’t qualify for a new heart because the Amyloid is in multiple organs so it excludes him from being considered.
The doctors consider his heart disease to be pretty advanced given the symptoms that went undiagnosed for over a year.
At this point all he can do is some intensive on-going chemo starting the 15th of this month consisting of Melphalan with Dexamethasone.
There is no cure but this combined treatment will buy us some time. Statistics say months to 1 year with treatment so we’re just going to take it one day at a time and not worry about tomorrow.
There are only 1200 cases a year diagnosed. We also learned today that Ben’s Hep C is back in full force even after 6 months of grueling Inteferon a 2nd time, the first in 2002. This was a huge blow but it could be years before the new liver gets attacked by the Hep C. Prior to transplant and 2 months into treatment, he had tested negative for the virus but like back in 2002, it reared its ugly head as it always does.
The bigger concern is the primary amyloid (also known as Al Amyloid) which attacks all vital organs and fairly rapidly once it’s in full force.
Ben wishes to act aggressively and will fight and not give up.
I wish I had better news
