Re: hyper-acusis sensitivity

[Guest guest]

I have heard of it maybe someone will fill in the blanks.

Gleevec 600

________________________________

From: " mtmaynor@... " <mtmaynor@...>

Sent: Friday, November 7, 2008 4:36:04 PM

Subject: [ ] hyper-acusis sensitivity

Zavie or Tracey or anybody out there:

A CML friend of mind in New Jersey was just diagnosed

with hyper-acusis sensitivity, which they say is not un-

common in people who take chemotherapy. She is on

Gleevec.

Anyone heard of such a thing or worse, faced it?

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

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[Guest guest]

Hi Matt,

I've never heard of Hyperacusis being related to Gleevec or CML in

any way (not to say that it's impossible though). Here's a website

that describes the condition and possible causes. Does your friend

fit into any of the categories mentioned?

http://tinyurl.com/5mtons

Tracey

>

> Zavie or Tracey or anybody out there:

>

> A CML friend of mind in New Jersey was just diagnosed

> with hyper-acusis sensitivity, which they say is not un-

> common in people who take chemotherapy. She is on

> Gleevec.

>

> Anyone heard of such a thing or worse, faced it?

>

>

> With the warmest regards,

>

> Matt

> CML of Florida

> Dx January of 2005

> Gleevec March of 2005

> Tasigna November of 2007

> Number 1078 in the Esteemed Zavie Zero Club

>

> **************AOL Search: Your one stop for directions, recipes and

all other

> Holiday needs. Search Now.

> (http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?

redir=http://searchblog.aol.com/2008/11/04/happy-holidays-from

> -aol-search/?ncid=emlcntussear00000001)

>

>

>

[Guest guest]

What do you do to alleviate the symptoms or

what adjustments do you make to deal with it?

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

904-219-9108 Phone

904-998-8571 Fax

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In a message dated 11/8/2008 7:48:47 A.M. Eastern Standard Time,

ets618@... writes:

-Hi Matt,

I have been dealing with this for about two years, it is

terrible. I suspected it was Gleevec related. As time goes on and

there are increasingly larger numbers of long term survivors, we may

see more unusual side effects which affect only small percentages of

patients.

-- In _@..._ (mailto: ) , mtmaynor@...

wrote:

>

> Zavie or Tracey or anybody out there:

>

> A CML friend of mind in New Jersey was just diagnosed

> with hyper-acusis sensitivity, which they say is not un-

> common in people who take chemotherapy. She is on

> Gleevec.

>

> Anyone heard of such a thing or worse, faced it?

>

>

> With the warmest regards,

>

> Matt

> CML of Florida

> Dx January of 2005

> Gleevec March of 2005

> Tasigna November of 2007

> Number 1078 in the Esteemed Zavie Zero Club

>

> ************ ************<WBR>**AOL Search: Your one stop for di

and all other

> Holiday needs. Search Now.

> (_http://pr.atwola.http://pr.atwhttp://pr.atwolahttp://pr.atwolahttp_

(http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?)

redir=_http://searchblog.http://searchhttp://searchttp://sehttp_

(http://searchblog.aol.com/2008/11/04/happy-holidays-from)

> -aol-search/ -aol-search -aol-s

>

>

> [Non-text portions of this message have been removed]

>

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-aol-search/?ncid=emlcntussear00000001)

[Guest guest]

-Hi Matt,

I have been dealing with this for about two years, it is

terrible. I suspected it was Gleevec related. As time goes on and

there are increasingly larger numbers of long term survivors, we may

see more unusual side effects which affect only small percentages of

patients.

-- In , mtmaynor@... wrote:

>

> Zavie or Tracey or anybody out there:

>

> A CML friend of mind in New Jersey was just diagnosed

> with hyper-acusis sensitivity, which they say is not un-

> common in people who take chemotherapy. She is on

> Gleevec.

>

> Anyone heard of such a thing or worse, faced it?

>

>

> With the warmest regards,

>

> Matt

> CML of Florida

> Dx January of 2005

> Gleevec March of 2005

> Tasigna November of 2007

> Number 1078 in the Esteemed Zavie Zero Club

>

> **************AOL Search: Your one stop for directions, recipes

and all other

> Holiday needs. Search Now.

> (http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?

redir=http://searchblog.aol.com/2008/11/04/happy-holidays-from

> -aol-search/?ncid=emlcntussear00000001)

>

>

>

[Guest guest]

Hello!

I'm Matt's friend from NJ who has hyperacusis sensitivity. Thanks

for your responses! I read some articles on the symptoms and how other

people live with it. I can't believe this is caused from Gleevec and

it's not listed as a side effect or my dr. didn't say anything. This

is awful! And insurance doesn't cover any type of ear plugs either!

MY ENT told me my ears will adjust within a year, is this true? Has

anyone " recovered " from this? Thanks for your help!

Jenn

[Guest guest]

Hi Jenn,

Welcome to the group! I'm sorry you have to deal with this problem

in addition to CML.

I looked through PubMed and couldn't find anything that linked

Gleevec to hyperacusis, in fact, I was able to find just one article

that had anything to do with hearing and that was a single case of a

person who actually lost their hearing 3 months after starting

Gleevec.

http://tinyurl.com/5zc7z7

I'm not sure what makes these doctors so sure that Gleevec was the

cause of the hearing loss as I would imagine there could be many

other possible explanations (virus, trauma, long standing bacterial

infection etc) but they summarize that it was the Gleevec. In any

case, this is the opposite of your problem so I guess it doesn't

matter anyway.

I wish I could be of more help, I hope you find some relief soon. I

can only imagine how annoying it must be.

Take care,

Tracey

>

> Hello!

> I'm Matt's friend from NJ who has hyperacusis sensitivity.

Thanks

> for your responses! I read some articles on the symptoms and how

other

> people live with it. I can't believe this is caused from Gleevec

and

> it's not listed as a side effect or my dr. didn't say anything.

This

> is awful! And insurance doesn't cover any type of ear plugs

either!

> MY ENT told me my ears will adjust within a year, is this true?

Has

> anyone " recovered " from this? Thanks for your help!

> Jenn

>

[Guest guest]

>

> Hello!

> I'm Matt's friend from NJ who has hyperacusis sensitivity. Thanks

> for your responses! I read some articles on the symptoms and how

other

> people live with it. I can't believe this is caused from Gleevec

and

> it's not listed as a side effect or my dr. didn't say anything.

This

> is awful! And insurance doesn't cover any type of ear plugs

either!

> MY ENT told me my ears will adjust within a year, is this true? Has

> anyone " recovered " from this? Thanks for your help!

> Jenn

>

Hi Jennie,

I'm Ellen, the other person with this condition. It is really

hard to be sure that Gleevec is the cause. As with any symptom,

there could be many causes.

Usually when significant numbers of people begin reporting the

same problem it is recognized as a side effect. This is pretty

unusual.

The obvious test would be to stop the drug and see if the

condition goes away. I have done that with other drugs. We don't

have that option with Gleevec, of course.

The best we can do is rule out other possible causes which is

sometimes a hugh pain. I do believe mine is related to Gleevec.

Good luck, I wear earplugs almost everywhere, it really helps.

[Guest guest]

For several months I had this problem was asking people to please not talk so

loud had to have the tv down low... All around would get frusterated with me but

was not  to the point as you guys. LIt only lasted sevedral months and lessened.

I do not get around crowds mall etc so do not know how it would be in that much

noise.

Good luck and I wish you all a wonderful weekend.

Anita

________________________________

From: ets618 <ets618@...>

Sent: Saturday, November 8, 2008 1:48:45 PM

Subject: [ ] Re: hyper-acusis sensitivity

>

> Hello!

> I'm Matt's friend from NJ who has hyperacusis sensitivity. Thanks

> for your responses! I read some articles on the symptoms and how

other

> people live with it. I can't believe this is caused from Gleevec

and

> it's not listed as a side effect or my dr. didn't say anything.

This

> is awful! And insurance doesn't cover any type of ear plugs

either!

> MY ENT told me my ears will adjust within a year, is this true? Has

> anyone " recovered " from this? Thanks for your help!

> Jenn

>

Hi Jennie,

I'm Ellen, the other person with this condition. It is really

hard to be sure that Gleevec is the cause. As with any symptom,

there could be many causes.

Usually when significant numbers of people begin reporting the

same problem it is recognized as a side effect. This is pretty

unusual.

The obvious test would be to stop the drug and see if the

condition goes away. I have done that with other drugs. We don't

have that option with Gleevec, of course.

The best we can do is rule out other possible causes which is

sometimes a hugh pain. I do believe mine is related to Gleevec.

Good luck, I wear earplugs almost everywhere, it really helps.

[Guest guest]

Hello and thanks for your responses! I do believe my hearing problems stem

from the Gleevec, whether the drs. believe that or not, I do. I've been

living with several other side effects of Gleevec for 6 years, but this is one

of

the worst. I've decided that it WILL go away and my ears will adjust.

(Either that or I'm going to smash every tv, radio, washing machine, dryer, and

all other noise makers to bits!) lol Well, have a happy Sunday!

Jenn

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