Issue 119 Sept. 2011 AN assoc. Notes

[Mickey]

Very interesting Danish study having to do with W+W. Alot of info to mull over but what interested me most was the last sentence that NO AN grew after 5 years, with a mean follow-up of about four years  in that data... Best wishes, Mickey

[leapyrtwins]

Sounds interesting.  I got my electronic copy of Notes a few days ago, but haven't had time to read it.

Will definitely have to check out that article. 

Jan

[Barb909]

I, too, found it very interesting. I was at the symposium and when I heard this my ears certainly tuned in, thinking I had heard incorrectly. My AN began deep inside my inner ear, was small when diagnosed, has grown 1mm in 1.5 years, and I am older than most, almost 59. My doctor, Cincinnati Dr. Theodosopolous, said that every year I go with no growth, the higher the chances that it will not grow.

I plan to test this study, and his theory, and prove them both credible!

Barb

[CHD63]

Barb .....

I hope so too!!!

Clarice

[Mickey]

Hi Barb! I was diognosed at 58 and am now almost 63. Everything has been "stable" W+W. I think its a great study which makes W+W a good option for more people who fit the bill...   Join the W+W brigade! Best wishes Mickey

[rm516]

Please provide the link to study or website, as I could not find it....
Meanwhile, I got a recent MRI: It is "Stable" per Radiologist (3 yrs), although dimensions were 2.9 cm vs 2.7 cm but doctor noted on the report that  slight variation could be from slice selection but "stable" ?
Nevertheless, no deterioration in hearing, still wonky head if too tired or stressed , no other changes. W&W continues..

[Keeping Up]

I can't find the study either - but is supportive of the information I have received from my ENT (and his study - eagerly awaiting his 15 year review of patients).

Most ANs (65%, and I think with a focus on the smaller and intracanicular tumours) didn't show any growth over a ten year period.  The majority of tumours which 'failed' conservative management fail within 3 years of diagnosis.  Most people will have read my rhyming off of this doctor's study previously.  I think the 10 year was released in 2007/2008 so am hoping for the 15 year in 2012!

I like the 5 year stat (I am assuming based on the text here - that if a tumour shows no (or minimal?) growth in the first five years of growth, that none showed growth in the next four years [but am not certain!]

Hoping to get off easy with this tumour.  (Hearing is something completely different ... that I am losing for sure!)

It is nice to see reinforcement to the W&W, it is sometimes difficult to sit back and just wait - but remain confident it is my best option for now!

Ann

[Mickey]

Just to clarify things a little, this is a booklet which is mailed out by ANA monthly or quarterly...I believe you have to be a member to get one. Very informative...Mickey

[Ellen K]

I think the article said that the one downside of the study was that "growth" was only defined as growth outside the IAC, but that overall the study was an excellent case for W&W.

[sharonov]

Like the rest of you, I was more than thrilled to read Dr. Link's report on the Danish study.  I've been W & W for I think 5 years now (I'm losing track of time) and am currently 69.  My tumour was 1.4 x 1.3 x 1.1 with no symptoms other than hearing loss.  Last MRI showed the middle number to be 1.6 and my doctor immediately wanted to schedule me for Gamma Knife (his specialty; they all want to do their own specialty.)  I gently reminded him that he had told me, 5 years ago, not to do anything because I'd lose 15% of my hearing if I had radiosurgery.  He quickly backtracked and said that recent studies showed that the hearing loss would continue anyway.  And, indeed, mine has.  I have very poor speech recognition in my affected year.  It's so bad that the audiologist suggested not getting a hearing aid as I would then just have louder garble.

Well, nonetheless, I don't want to risk any of the other side effects unless I absolutely have to, so was overjoyed to read the study.  Hopefully all of you who haven't been able to access the info yet have managed to do so.
Sharon

[G_Man]

Mickey  I was there when he said it.  I was there when so many doctors said so much I was dizzy.  Which in that case was a good thing.  Anyway, seeing it in print made me feel better, like I wasn't just imagining or dreaming it.  At the dinner after the NYC meeting on saturday I overheard someone who said something I've heard too many times.  He said, "I don't know why anyone would choose Watch and Wait."  I heard at least 2 doctors say this at the symposium.  Well we know why.  Now studies are starting to prove this course more and more appropriate for some of us.  I hope you and I are refered to in future studies when we are W+W for 20+ years (fingers crossed). 
Glen

[Mickey]

Hi Glen! Nice seeing you at the meeting. Alot of interesting things about W+W.  I like NYU`s approach to all methods .  Impressing me especially  with there treatment orally which is showing alot of promise in future for W+W.  Presentation on Gamma Knife was also outstanding... Keep the faith!

Best wishes, Mickey

[rm516]

<<<<i LIKE NYU`s approach to all methods .  Impressing me especially  with there treatment orally which is showing alot of promise in future for W+W.>>>
can you please elaborate,,,

[Mickey]

NYU is giving a certain medicine by mouth to certain volunteers with the hope of tumor shrinkage, primarily NF2. I forgot the name of the drug which was mentioned at the NYANA meeting on Saturday. Best wishes, Mickey

[rm516]

Is it Avastin or Lapatinib ?
These are clinical trial/study medicine but only used for NF2.
What about just AN ?
Thanks for reply..