General Category > NF2

Hearing restored in NF2 Patient w/drug treatment of Avastin

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Forum Admin:
Thanks for sharing the article.

ajdibella:
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.

regards,

Tony D.

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