This thread is dated, but I just recently subscribed to ANA's Discussion Forum.
I was diagnosed with NF2 in 1992 and followed a 'watch & wait' strategy for many years, even as my bilateral ANs/VS grew and my hearing declined.
Then in the fall of 2017, I reconsidered my strategy and explored treatment options.
Two years ago (spring of 2018), I started twice-monthly infusions of Avastin. After 12 months of treatment, one AN/VS shrunk 20%, the other 1%. Had no noticeable side effects.
I then moved to what my doc (@ MGH's NF2 Clinic) termed a 'maintenance' regimen - twice monthly treatments for three months, followed by no treatments for 3 months, etc.
Now having problems with high protein levels in my urine suggesting that the Avastin is affecting my kidney function. During last treatment phase, I had only 4 treatments rather than the scheduled 6. Will restart treatment in early August.
After years of slow decline, my hearing has been stable during the last two years.
I don't know the cell chemistry of all this, but I believe that Avastin has been used only with patients like me who have underlying NF2 condition.
Impossible to determine how long I will continue treatments and what benefits/negative side effect I will experience. Apparently that varies a great deal from person to person.