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I can't cite anything, but it is my understanding there is no evidence of

that; Marie

fact or fiction

>Can I ask the crew has there been any clinical evidence (someone getting

it)

>that Nf2ers are more prone to developing cancer ?? I know they SAY that

>this should happen.....

>rosemary

>

>

>

>

>

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in EARE case, nf2 ers develop cancer.

lets open up the old MS vs RS debate on this issue:)

joanie

Marie Drew wrote:

>

> I can't cite anything, but it is my understanding there is no evidence of

> that; Marie

> fact or fiction

>

> >Can I ask the crew has there been any clinical evidence (someone getting

> it)

> >that Nf2ers are more prone to developing cancer ?? I know they SAY that

> >this should happen.....

> >rosemary

> >

> >

> >

> >

> >

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Hi Joanie, are you referring to microsurgery vs radio surgery and saying

that AN's treated with RS get cancer........did this actually ever get

proven???? Where is the evidence?

Actually my question was more general ie. according to the experts, Nf2ers

should be one step closer to getting cancer independently of any RS to

exacerbate. It seems to me that considering cancer affects 1 in 5, there is

not much around here......

/ on 23/11/00 2:46 AM, Joan Emerick at jemerick@... wrote:

> in EARE case, nf2 ers develop cancer.

> lets open up the old MS vs RS debate on this issue:)

>

> joanie

> Marie Drew wrote:

>>

>> I can't cite anything, but it is my understanding there is no evidence of

>> that; Marie

>> fact or fiction

>>

>>> Can I ask the crew has there been any clinical evidence (someone getting

>> it)

>>> that Nf2ers are more prone to developing cancer ?? I know they SAY that

>>> this should happen.....

>>> rosemary

>>>

>>>

>>>

>>>

>>>

>

>

>

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Share on other sites

Hi Joanie, are you referring to microsurgery vs radio surgery and saying

that AN's treated with RS get cancer........did this actually ever get

proven???? Where is the evidence?

Actually my question was more general ie. according to the experts, Nf2ers

should be one step closer to getting cancer independently of any RS to

exacerbate. It seems to me that considering cancer affects 1 in 5, there is

not much around here......

/ on 23/11/00 2:46 AM, Joan Emerick at jemerick@... wrote:

> in EARE case, nf2 ers develop cancer.

> lets open up the old MS vs RS debate on this issue:)

>

> joanie

> Marie Drew wrote:

>>

>> I can't cite anything, but it is my understanding there is no evidence of

>> that; Marie

>> fact or fiction

>>

>>> Can I ask the crew has there been any clinical evidence (someone getting

>> it)

>>> that Nf2ers are more prone to developing cancer ?? I know they SAY that

>>> this should happen.....

>>> rosemary

>>>

>>>

>>>

>>>

>>>

>

>

>

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Well that being the case, this is indeed curious. In fact, given the

incredibly high incidence of cancer, there seems to be a remarkable absence

amongst Nf2ers. What does this mean? The experts must have something wrong

here.....

on 23/11/00 1:53 AM, Marie Drew at mcdrew@... wrote:

> I can't cite anything, but it is my understanding there is no evidence of

> that; Marie

> fact or fiction

>

>

>> Can I ask the crew has there been any clinical evidence (someone getting

> it)

>> that Nf2ers are more prone to developing cancer ?? I know they SAY that

>> this should happen.....

>> rosemary

>>

>>

>>

>>

>>

>

>

>

>

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Share on other sites

Well that being the case, this is indeed curious. In fact, given the

incredibly high incidence of cancer, there seems to be a remarkable absence

amongst Nf2ers. What does this mean? The experts must have something wrong

here.....

on 23/11/00 1:53 AM, Marie Drew at mcdrew@... wrote:

> I can't cite anything, but it is my understanding there is no evidence of

> that; Marie

> fact or fiction

>

>

>> Can I ask the crew has there been any clinical evidence (someone getting

> it)

>> that Nf2ers are more prone to developing cancer ?? I know they SAY that

>> this should happen.....

>> rosemary

>>

>>

>>

>>

>>

>

>

>

>

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Share on other sites

Why are you saying there is an absense among NF2ers? My point was that

there was not a higher than normal incidence; but I have two friends with

NF2 that have both had masectomies; Marie

fact or fiction

>>

>>

>>> Can I ask the crew has there been any clinical evidence (someone getting

>> it)

>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

that

>>> this should happen.....

>>> rosemary

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>

>

>

>

>

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Share on other sites

Why are you saying there is an absense among NF2ers? My point was that

there was not a higher than normal incidence; but I have two friends with

NF2 that have both had masectomies; Marie

fact or fiction

>>

>>

>>> Can I ask the crew has there been any clinical evidence (someone getting

>> it)

>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

that

>>> this should happen.....

>>> rosemary

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>

>

>

>

>

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Share on other sites

Why are you saying there is an absense among NF2ers? My point was that

there was not a higher than normal incidence; but I have two friends with

NF2 that have both had masectomies; Marie

fact or fiction

>>

>>

>>> Can I ask the crew has there been any clinical evidence (someone getting

>> it)

>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

that

>>> this should happen.....

>>> rosemary

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>

>

>

>

>

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Share on other sites

i said that because I thought that you said that... Still, all I'm trying to

work out is whether it is true what they believe about having a mutated Nf2

gene ie you are one step there in the 2-hit mechanism of getting cancer.

That means that we should have considerably more prevalence than the

normal incidence (possibly 50% more prevalence)......I don't think they are

right about this, and I'm just trying to verify.

Do we know of others with Nf2 and cancer??

rosemary

on 23/11/00 1:02 PM, Marie Drew at mcdrew@... wrote:

> Why are you saying there is an absense among NF2ers? My point was that

> there was not a higher than normal incidence; but I have two friends with

> NF2 that have both had masectomies; Marie

> fact or fiction

>>>

>>>

>>>> Can I ask the crew has there been any clinical evidence (someone getting

>>> it)

>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> that

>>>> this should happen.....

>>>> rosemary

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>>

>

>

>

>

Link to comment
Share on other sites

i said that because I thought that you said that... Still, all I'm trying to

work out is whether it is true what they believe about having a mutated Nf2

gene ie you are one step there in the 2-hit mechanism of getting cancer.

That means that we should have considerably more prevalence than the

normal incidence (possibly 50% more prevalence)......I don't think they are

right about this, and I'm just trying to verify.

Do we know of others with Nf2 and cancer??

rosemary

on 23/11/00 1:02 PM, Marie Drew at mcdrew@... wrote:

> Why are you saying there is an absense among NF2ers? My point was that

> there was not a higher than normal incidence; but I have two friends with

> NF2 that have both had masectomies; Marie

> fact or fiction

>>>

>>>

>>>> Can I ask the crew has there been any clinical evidence (someone getting

>>> it)

>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> that

>>>> this should happen.....

>>>> rosemary

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>>

>

>

>

>

Link to comment
Share on other sites

i said that because I thought that you said that... Still, all I'm trying to

work out is whether it is true what they believe about having a mutated Nf2

gene ie you are one step there in the 2-hit mechanism of getting cancer.

That means that we should have considerably more prevalence than the

normal incidence (possibly 50% more prevalence)......I don't think they are

right about this, and I'm just trying to verify.

Do we know of others with Nf2 and cancer??

rosemary

on 23/11/00 1:02 PM, Marie Drew at mcdrew@... wrote:

> Why are you saying there is an absense among NF2ers? My point was that

> there was not a higher than normal incidence; but I have two friends with

> NF2 that have both had masectomies; Marie

> fact or fiction

>>>

>>>

>>>> Can I ask the crew has there been any clinical evidence (someone getting

>>> it)

>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> that

>>>> this should happen.....

>>>> rosemary

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>>

>

>

>

>

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Share on other sites

ok, I'll bite:)

I asked my rad on (Radiation Oncologist)' specically this Q. He said no

to it. To his knowledge nf2 is and never will be cancer. The cancer is

another disease totally. I asked because I was worried that about my FRS,

in that I would develop cancer from it. But, the percentage to get cancer

is so high, and getting higher!! the risk of FRS raising that percent is

very slight to not at all. It stands to reason that all radiation effects

human tissue to become cancerous, but I don't think they choose to

acknowledge that link( at least not the Dr I spoke to). Also a true story,

one would not chose radiation therapy for the fun of it either, weighing out

the good and the bad, you make your choice. What I have heard is

* That NF2 and cancer are unrelated diseases

* the cancer rate of NF2 is 1 tumor in a 100 of being cancerous

*that FRS does not " cause " cancer (personally I think it does)

*Gamma will cause cancer in 30 years

There are SO MANY unanswered Q's and Q's with answers that

just don't ring true. So any info you have, I'll read:) -Lori:)

fact or fiction

> >>>

> >>>

> >>>> Can I ask the crew has there been any clinical evidence (someone

getting

> >>> it)

> >>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> > that

> >>>> this should happen.....

> >>>> rosemary

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>

> >>

> >>

> >>

> >>

> >

> >

> >

> >

>

>

>

>

>

Link to comment
Share on other sites

ok, I'll bite:)

I asked my rad on (Radiation Oncologist)' specically this Q. He said no

to it. To his knowledge nf2 is and never will be cancer. The cancer is

another disease totally. I asked because I was worried that about my FRS,

in that I would develop cancer from it. But, the percentage to get cancer

is so high, and getting higher!! the risk of FRS raising that percent is

very slight to not at all. It stands to reason that all radiation effects

human tissue to become cancerous, but I don't think they choose to

acknowledge that link( at least not the Dr I spoke to). Also a true story,

one would not chose radiation therapy for the fun of it either, weighing out

the good and the bad, you make your choice. What I have heard is

* That NF2 and cancer are unrelated diseases

* the cancer rate of NF2 is 1 tumor in a 100 of being cancerous

*that FRS does not " cause " cancer (personally I think it does)

*Gamma will cause cancer in 30 years

There are SO MANY unanswered Q's and Q's with answers that

just don't ring true. So any info you have, I'll read:) -Lori:)

fact or fiction

> >>>

> >>>

> >>>> Can I ask the crew has there been any clinical evidence (someone

getting

> >>> it)

> >>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> > that

> >>>> this should happen.....

> >>>> rosemary

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>

> >>

> >>

> >>

> >>

> >

> >

> >

> >

>

>

>

>

>

Link to comment
Share on other sites

ok, I'll bite:)

I asked my rad on (Radiation Oncologist)' specically this Q. He said no

to it. To his knowledge nf2 is and never will be cancer. The cancer is

another disease totally. I asked because I was worried that about my FRS,

in that I would develop cancer from it. But, the percentage to get cancer

is so high, and getting higher!! the risk of FRS raising that percent is

very slight to not at all. It stands to reason that all radiation effects

human tissue to become cancerous, but I don't think they choose to

acknowledge that link( at least not the Dr I spoke to). Also a true story,

one would not chose radiation therapy for the fun of it either, weighing out

the good and the bad, you make your choice. What I have heard is

* That NF2 and cancer are unrelated diseases

* the cancer rate of NF2 is 1 tumor in a 100 of being cancerous

*that FRS does not " cause " cancer (personally I think it does)

*Gamma will cause cancer in 30 years

There are SO MANY unanswered Q's and Q's with answers that

just don't ring true. So any info you have, I'll read:) -Lori:)

fact or fiction

> >>>

> >>>

> >>>> Can I ask the crew has there been any clinical evidence (someone

getting

> >>> it)

> >>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

> > that

> >>>> this should happen.....

> >>>> rosemary

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>

> >>

> >>

> >>

> >>

> >

> >

> >

> >

>

>

>

>

>

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Share on other sites

Hello Rosemary,

I had Cancer, a tumour in the Brainstem called a Brainstem Glioma. Yes it

is in the Brainstem. But I was told it was not, like the rest of my tumours,

NF2 related. The reasons given:

>because it is a Brainstem Gliomsa, starting growth in the brainstem as

opposed to growing on and or into the brainstem. This also being the reason

for its name.

>NF2 tumors are not cancer tumors. The Glioma is.

Since I joined the crew I have heard of only one other member mentioning

having this tumour, the Brainstem Glioma. Following radiation treatment of

this tumour, one year later, I developed another at the upper part of the

Brainstem, the first one had been just above the medullary junction (where

the brainstem and spine/ spinal cord join). This I was told was likely

because of the radiation, that following radiation treatments cancer may

move and show in a new location. But given the very low success rate of

Chemotherapy drugs in respect to treatment of brain tumours, radiation was

really the best choice by far. There was something said about very few Chemo

drugs being successful at penetrating the head/neck barrier to reach the

brain. I wish I could remember the wording of the group of Drs in this

respect. But this was not only prairie doc talk, they consulted with drs

from larger centres in Canada. What they told me in respect to Chemo-drugs

and radiation is supported by the Brain tumour foundation info. As well I

have heard the theory of tumors the same as what was previously treated by

radiation showing following treatment in other areas of the body, a few

times since in various articles. I had 28 treatments of FRS on my first

Glioma, because this was not focused to any great respect it could not be

repeated to the upper area and the Drs decided it best to go with Chemo.

They would tell me nothing of the level of cancer involved with the second

tumour and told me following the 1 1/2 year treatments till it disappeaed,

that Chemo is not successful in treating these tumours.

I have also been told the same of the bi-lateral Jugular Foreamen. That

they are not NF2 tumors. But I have been told the bi-lateral AN's,

meningiomas, all the spinal tumours but the Astrocytoma, the epedymomas,

neurofibromas, neuromas,scwannoma's and oh gosh, what is the name of the 2

that effect and cause such pain in my face as well as the 3 in the sinus

area, anyway, those 5 as well, I am told are all NF2 tumours. Has anyone

else been told these things in respect to cancer, radiation and/or their

tumours?

Sheryn

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Hello Rosemary,

I had Cancer, a tumour in the Brainstem called a Brainstem Glioma. Yes it

is in the Brainstem. But I was told it was not, like the rest of my tumours,

NF2 related. The reasons given:

>because it is a Brainstem Gliomsa, starting growth in the brainstem as

opposed to growing on and or into the brainstem. This also being the reason

for its name.

>NF2 tumors are not cancer tumors. The Glioma is.

Since I joined the crew I have heard of only one other member mentioning

having this tumour, the Brainstem Glioma. Following radiation treatment of

this tumour, one year later, I developed another at the upper part of the

Brainstem, the first one had been just above the medullary junction (where

the brainstem and spine/ spinal cord join). This I was told was likely

because of the radiation, that following radiation treatments cancer may

move and show in a new location. But given the very low success rate of

Chemotherapy drugs in respect to treatment of brain tumours, radiation was

really the best choice by far. There was something said about very few Chemo

drugs being successful at penetrating the head/neck barrier to reach the

brain. I wish I could remember the wording of the group of Drs in this

respect. But this was not only prairie doc talk, they consulted with drs

from larger centres in Canada. What they told me in respect to Chemo-drugs

and radiation is supported by the Brain tumour foundation info. As well I

have heard the theory of tumors the same as what was previously treated by

radiation showing following treatment in other areas of the body, a few

times since in various articles. I had 28 treatments of FRS on my first

Glioma, because this was not focused to any great respect it could not be

repeated to the upper area and the Drs decided it best to go with Chemo.

They would tell me nothing of the level of cancer involved with the second

tumour and told me following the 1 1/2 year treatments till it disappeaed,

that Chemo is not successful in treating these tumours.

I have also been told the same of the bi-lateral Jugular Foreamen. That

they are not NF2 tumors. But I have been told the bi-lateral AN's,

meningiomas, all the spinal tumours but the Astrocytoma, the epedymomas,

neurofibromas, neuromas,scwannoma's and oh gosh, what is the name of the 2

that effect and cause such pain in my face as well as the 3 in the sinus

area, anyway, those 5 as well, I am told are all NF2 tumours. Has anyone

else been told these things in respect to cancer, radiation and/or their

tumours?

Sheryn

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Hello Rosemary,

I had Cancer, a tumour in the Brainstem called a Brainstem Glioma. Yes it

is in the Brainstem. But I was told it was not, like the rest of my tumours,

NF2 related. The reasons given:

>because it is a Brainstem Gliomsa, starting growth in the brainstem as

opposed to growing on and or into the brainstem. This also being the reason

for its name.

>NF2 tumors are not cancer tumors. The Glioma is.

Since I joined the crew I have heard of only one other member mentioning

having this tumour, the Brainstem Glioma. Following radiation treatment of

this tumour, one year later, I developed another at the upper part of the

Brainstem, the first one had been just above the medullary junction (where

the brainstem and spine/ spinal cord join). This I was told was likely

because of the radiation, that following radiation treatments cancer may

move and show in a new location. But given the very low success rate of

Chemotherapy drugs in respect to treatment of brain tumours, radiation was

really the best choice by far. There was something said about very few Chemo

drugs being successful at penetrating the head/neck barrier to reach the

brain. I wish I could remember the wording of the group of Drs in this

respect. But this was not only prairie doc talk, they consulted with drs

from larger centres in Canada. What they told me in respect to Chemo-drugs

and radiation is supported by the Brain tumour foundation info. As well I

have heard the theory of tumors the same as what was previously treated by

radiation showing following treatment in other areas of the body, a few

times since in various articles. I had 28 treatments of FRS on my first

Glioma, because this was not focused to any great respect it could not be

repeated to the upper area and the Drs decided it best to go with Chemo.

They would tell me nothing of the level of cancer involved with the second

tumour and told me following the 1 1/2 year treatments till it disappeaed,

that Chemo is not successful in treating these tumours.

I have also been told the same of the bi-lateral Jugular Foreamen. That

they are not NF2 tumors. But I have been told the bi-lateral AN's,

meningiomas, all the spinal tumours but the Astrocytoma, the epedymomas,

neurofibromas, neuromas,scwannoma's and oh gosh, what is the name of the 2

that effect and cause such pain in my face as well as the 3 in the sinus

area, anyway, those 5 as well, I am told are all NF2 tumours. Has anyone

else been told these things in respect to cancer, radiation and/or their

tumours?

Sheryn

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on 24/11/00 9:07 AM, Fusca at ffusca@... wrote:

You mean gareth , which article??

The thing is, cancer is a 2-hit mechanism, so with a mutated Nf2 gene,

you are already one step there. Children who develop cancer are pressumed to

have inherited a mutated cancer gene, and then gone onto accumulate the 6-10

mutations they think are required to provide the second hit.....Our bodies

create mutated genes all the time....environmental, diet etc. I think only 1

in 10000( or is it 1000??) of mutated genes DON'T get picked up and

corrected by our immune system, repair DNA genes, etc.

So, they think, understandably, that Nf2ers should have a much higher

incidence of cancer. Like with a mutated nf2 gene, you are permanently half

way there......

This is how I understand the literature anyway, correct me if I am wrong.

My point is......I don't think this appears to happen or is statistically

borne out by the Nf2 population (with a normal cancer incidence of 1-5),

which makes me wonder about a lot of other things they presume about

Nf2......

> Rosemary,

>

> I think it is true that if you have NF2, your chances of getting cancer are

> higher than the general population (but they are still small). There have been

> studies on this. The article from the UK Dr (can't recall the name at the

> moment) gave the actual numbers.

>

> If you have RS, the chances will get higher. How much higher is very open to

> debate and (in my opinion) no-one really knows.

>

>

>

> ----------

> From: Prowse

> Sent: Wednesday, November 22, 2000 10:35 PM

> To: NF2_Crewegroups

> Subject: Re: fact or fiction

>

> i said that because I thought that you said that... Still, all I'm trying to

> work out is whether it is true what they believe about having a mutated Nf2

> gene ie you are one step there in the 2-hit mechanism of getting cancer.

> That means that we should have considerably more prevalence than the

> normal incidence (possibly 50% more prevalence)......I don't think they are

> right about this, and I'm just trying to verify.

>

> Do we know of others with Nf2 and cancer??

> rosemary

>

>

>

> on 23/11/00 1:02 PM, Marie Drew at mcdrew@... wrote:

>

>> Why are you saying there is an absense among NF2ers? My point was that

>> there was not a higher than normal incidence; but I have two friends with

>> NF2 that have both had masectomies; Marie

>> fact or fiction

>>>>

>>>>

>>>>> Can I ask the crew has there been any clinical evidence (someone getting

>>>> it)

>>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

>> that

>>>>> this should happen.....

>>>>> rosemary

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

on 24/11/00 9:07 AM, Fusca at ffusca@... wrote:

You mean gareth , which article??

The thing is, cancer is a 2-hit mechanism, so with a mutated Nf2 gene,

you are already one step there. Children who develop cancer are pressumed to

have inherited a mutated cancer gene, and then gone onto accumulate the 6-10

mutations they think are required to provide the second hit.....Our bodies

create mutated genes all the time....environmental, diet etc. I think only 1

in 10000( or is it 1000??) of mutated genes DON'T get picked up and

corrected by our immune system, repair DNA genes, etc.

So, they think, understandably, that Nf2ers should have a much higher

incidence of cancer. Like with a mutated nf2 gene, you are permanently half

way there......

This is how I understand the literature anyway, correct me if I am wrong.

My point is......I don't think this appears to happen or is statistically

borne out by the Nf2 population (with a normal cancer incidence of 1-5),

which makes me wonder about a lot of other things they presume about

Nf2......

> Rosemary,

>

> I think it is true that if you have NF2, your chances of getting cancer are

> higher than the general population (but they are still small). There have been

> studies on this. The article from the UK Dr (can't recall the name at the

> moment) gave the actual numbers.

>

> If you have RS, the chances will get higher. How much higher is very open to

> debate and (in my opinion) no-one really knows.

>

>

>

> ----------

> From: Prowse

> Sent: Wednesday, November 22, 2000 10:35 PM

> To: NF2_Crewegroups

> Subject: Re: fact or fiction

>

> i said that because I thought that you said that... Still, all I'm trying to

> work out is whether it is true what they believe about having a mutated Nf2

> gene ie you are one step there in the 2-hit mechanism of getting cancer.

> That means that we should have considerably more prevalence than the

> normal incidence (possibly 50% more prevalence)......I don't think they are

> right about this, and I'm just trying to verify.

>

> Do we know of others with Nf2 and cancer??

> rosemary

>

>

>

> on 23/11/00 1:02 PM, Marie Drew at mcdrew@... wrote:

>

>> Why are you saying there is an absense among NF2ers? My point was that

>> there was not a higher than normal incidence; but I have two friends with

>> NF2 that have both had masectomies; Marie

>> fact or fiction

>>>>

>>>>

>>>>> Can I ask the crew has there been any clinical evidence (someone getting

>>>> it)

>>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY

>> that

>>>>> this should happen.....

>>>>> rosemary

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>>

>>>

>>>

>>

>>

>>

>>

>

>

>

>

>

>

>

>

>

>

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