Hi, Bobby, welcome to the list. I'm sorry to say that you were dx the
day after my 19-year old stepson Bradley passed away of ES. He had a
recurrence during the initial standard protocol, never achieved
remission. After we found out the cancer was spreading again, the
autologous BMT was presented to us as the only "curative" option
available. Our onc said it's usually given during a remission period
with the goal of preventing recurrence. However, as you state, there
just hasn't been enough research for them to have shown if it's
effective as part of initial treatment. It hasn't gone through all the
hurdles to qualify on paper as a treatment for ES specifically, so your
insurance company may consider it experimental. In our case, B was too
sick to try it; he got an infection that caused pneumonia and you can't
wipe out those white cells unless you're comparatively healthy.
Unfortunately, that's often how it happens - they don't want to try BMT
as long as a more well-known protocol is available as an option, but by
the time the other stuff proves to be ineffective, the patient is too
sick for the BMT. It's a tough choice for you. I'd be tempted to go
for the BMT. It might be worth getting multiple opinions before you
decide. I'm glad you're actively involved in choosing you're treatment
plan! Hang in there and fight, fight, fight! - Elizabeth