ANA Discussion Forum
General Category => NF2 => Topic started by: ppearl214 on July 09, 2009, 05:26:40 am
The article is quite large for me to copy/paste here, so suggestion is to follow the link noted above.....
Amazing! Simply amazing! Done right here in Boston at Mass General Hosp/Mass Eye and Ear
Thanks for sharing this great article.
I was just about to post the same link. Amazing research - I really hope it yields results as good for more NF2 patients! I didn't care for the line in the article that radiation treatment "may cause cancer" but otherwise there's some really interesting information. I wonder what it will mean down the road for AN patients without NF2.
Thanks for posting it!
Thanks for posting it! This is an amazing article; I almost cried when I read about this young lady.
Its interesting in many respects
NF2 was always thought "inccurable"
avastin was originally an anti-cancer medication
- interesting it works for NF2 (which is not really a cancer)
The angiogesic(?) suppression (ie restriction of new blood vessels)
is exactly how the Bio30 is supposed to work
- there are separate posts on the Bio 30
and the proposal to move it to a formal test on the group
My first thought - not always so useful ful for normal AN`s
but in some cases - the large ones do gain extra blood vessel supply
and in this case avastin should help (or preventing itfrom happening)
Only, negative, avastin costs
roughly 30 times that of the Bio
still, we prgress
Thanks for sharing the article.
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.