NF2 Pill ?

[Guest guest]

Hey Tev,

I'm confused. You take this strictly for meningiomas? I have 4 and do not take

any med at all. I feel great. They arent growing and doc says if they do theuy

will be easy to remove. Ive never had a seizure or even a headache. Why you on

such powerful med>> I cant even imagine a blood transfusion.

dorft@... wrote:

> From: dorft@...

>

> Hi Marie and yes i have been on hydroxyurea for more then two years now and

> the meningiomas have not grown but it is hard to tell if its because of the

> drug or because they are slow growing. Well im not going to take chances

> and will continue to take this drug until further meningioma growth shows up

> or a new and more poweful drug is found and is available.but for me

> Hydroxyurea is the way to go at this point ! I used to have blood tests every

> week and now it is every two weeks because my hemoglobin,Red blood cell,white

> blood cell, and Hct and platelet count are stable .In the first 6 months of

> taking the drug i need a blood transfusion .Barbara F. could you please tell

> me who is the other Crew member taking hydroxyurea so we can share our

> experiences with the drug . hope I filled you in Marie .Tev

[Guest guest]

,

I love your optimism. But as someone who is relatively young, and hopes some

form of real treatment occurs in her lifetime, what do you base this on? I am

not up to date on any nF2 research and just wantto know if this is a real

possibility?

>

> >

> >

> >Perhaps you should just wait another 4 or 5 years until that pill

> >comes out

> >seeing that FSR and GK are so dangerous ~|)))

> >.

>

[Guest guest]

,

I love your optimism. But as someone who is relatively young, and hopes some

form of real treatment occurs in her lifetime, what do you base this on? I am

not up to date on any nF2 research and just wantto know if this is a real

possibility?

_________________________

Its amazing how fast they're coming out with new drugs these days, especially

keeping in mind how SLOW the FDA is in granting approval. I heard on a news show

that medical science will make more progress in the next 5 - 10 years in

fighting disease than it has in the last 50 combined. So anything is possible

, in your lifetime even probable. They know the NF2 gene, they identified

the Merlin protein. The hardest part is over. Now we gotta wait for the drug

companies to WANT to solve THIS puzzle. And other options such as gene therapy

are also on the horizon.

I just saw on 20/20 that a form of leukemia is about to be wiped out, by a pill.

Trial had 31 patients, all 31 were in complete remission.

Keep the faith. Hope is all a lot of us have left.

-Pat

[Guest guest]

Thank you . Your optimism is very refreshing and the points you made are

very sound. Thanks for the upper!

[Guest guest]

Hey ,

Don't forget I put my neck on the line to criticize HEI for their view on RS not

long ago. I thought I would have to build a trench to escape the fallout from

that but it was relatively mild bombing (and in the HEI tradition, no

radioactive material!!). There are tons of happy HEI alumni on the Crew that I

thought may get upset but I think we established the bottom line a while ago -

" you can't argue with results! " .

I agree with you that the 'NF2 Pill' is the way to go. The problem with

microsurgery and RS is that it treats the symptoms and not the cause. The ideal

way to solve a problem is treat the root cause. Perhaps the pill will

strengthen our tumour suppressor gene so we will never have another tumour to

worry about. All we have to worry about now is when the pill will be on the

market!!

I may have criticized GK in the past but only because the Kman (Dr. Kondziolk in

Pitts) talks about GK as if it were perfect. GK is not perfect but I have been

reading some material from the International Commission on Radiological

Protection (ICRP) which puts RS in a good light. The ICRP in a group formed in

1928 to protect the public from radiological exposure (the x-ray was discovered

in the late 1800's and the need for radiological protection soon arose). Most of

the ICRP material is for radiological protection in the workplace but there are

some very interesting articles on RS. Unfortunately, the material is very

technical and hard to understand but it is very un-biased (unlike the Kman or

HEI). I read a mid-80's publication which talked about FRS. Someone on here

described FRS some time ago and it was exactly the way it appeared in the ICRP

text. I thought this stuff would make me queasy about RS but it actually helped

put me at ease.

(in the process of scheduling GK with the Kman)

============

In my original Post I said that there would probably be a tumour suppressor

drug within 5 to 10 years. In my post to I was only having a dig at

him because he was talking about Gamma Knife in a negative way.

I do believe that what I have said is going to happen in that time

frame, (5 to 10 years) remember these are only my thoughts based on the

events that have happened in the last 6 to 9 months.

..

[This message contained attachments]

[Guest guest]

can you do me a favour, because there has been a lot of dispute about

damage to healthy tissue with G/K, FSR can you get the answer for me from

THE man seeing as you are heading for treatment in the near future. (It's

important)

" If you take on this mission the government will not recognise you as an

American citizen, and will be banished to the waste land of Canada for the

rest of your life. (with the occasional visit to Aussie). " ~|)))

Anyone can answer... thanks.

....

.

RE: NF2 Pill ?

>

>

> Hey ,

>

> Don't forget I put my neck on the line to criticize HEI for their view on

RS not long ago.

[Guest guest]

I know this is coming a little late, but I just finally got my NF2 folder

cleaned out!!

I believe that it is possible TODAY for them to develop this NF2 pill ...

but unfortunately, NF2 is an orphan disease (or whatever they call that).

This means that our 1:50 000 rate (or whatever number you decide to use) is

against us. Why develop a drug that will benefit only a limited number of

people? (gotta love capitalism) As well, if they ever did develop such a

pill, can you imagine what the cost is going to be? Over time, it will be

cheaper to have MS than to stay on this pill. I for one know that my

insurance only covers so much for medication a year. What it's going to

come down to is, if you don't want to go deaf, have tumours, etc..., you're

going to need to fork over the cash. And if you can't afford it, well, then

there's always MS, or RS, or whatever for you.

I believe it's very possible for a treatment to be developed. In fact, I

know it will happen. But there will be costs.

Get FREE internet access at http://www.freeinternetconnection.com

: From: pdillon438@...

:

: , in your lifetime even probable. They know the NF2 gene, they

identified the Merlin protein. The hardest part is over. Now we gotta wait

for the drug companies to WANT to solve THIS puzzle. And other options such

as gene therapy are also on the horizon.

:

[Guest guest]

>Hi my name is Gareth and I have got NF2. I should imagine like all of you, I

feel in such a desperate situation and always hope that a cure will be found.

I was 'surfing' the internet and came across some NF2 patients who are testing a

new drug, you guys have probably heard of it already??

The drug is called Hydroxyurea and it apparently stops the growth or shrinks the

tumours. I am very unfamiliar with this drug so do not quote me on that.

I have had two brain tumours removed abd last month I had a tumour removed from

my spine. I have got an operation planned in June of this year to remove an

acoustic neuroma from my right ear.

If there are any developments with any new drugs or if anyone knows any more

about this Hydroxyurea please contact me on:

gjroberts@...

I am at the stage where I am quite willing to be a 'test study' and try any new

drug. If these drugs do not work I can at least say that I tried. I know with

new drugs, all the side affects are not fully understood, but when these

acoustic neuromas are removed it will leave me without any hearing and there is

nothing I can do to help myself!!

All the best ... Gareth

>

>I know this is coming a little late, but I just finally got my NF2 folder

>cleaned out!!

>

>I believe that it is possible TODAY for them to develop this NF2 pill ...

>but unfortunately, NF2 is an orphan disease (or whatever they call that).

>This means that our 1:50 000 rate (or whatever number you decide to use) is

>against us. Why develop a drug that will benefit only a limited number of

>people? (gotta love capitalism) As well, if they ever did develop such a

>pill, can you imagine what the cost is going to be? Over time, it will be

>cheaper to have MS than to stay on this pill. I for one know that my

>insurance only covers so much for medication a year. What it's going to

>come down to is, if you don't want to go deaf, have tumours, etc..., you're

>going to need to fork over the cash. And if you can't afford it, well, then

>there's always MS, or RS, or whatever for you.

>

>I believe it's very possible for a treatment to be developed. In fact, I

>know it will happen. But there will be costs.

>

>

>

>Get FREE internet access at <a Target='_new'

Href='http://www.freeinternetconnection.com'>http://www.freeinternetconnection.c\

om</a>

>

>

>: From: pdillon438@...

>:

>: , in your lifetime even probable. They know the NF2 gene, they

>identified the Merlin protein. The hardest part is over. Now we gotta wait

>for the drug companies to WANT to solve THIS puzzle. And other options such

>as gene therapy are also on the horizon.

>:

--------------------

talk21 your FREE portable and private address on the net at

http://www.talk21.com

[Guest guest]

Yes there is Gareth! Becoming deaf isn't the end of the world. Learn a new way

to communicat, Learn sign, ask your family and friends to learn sign. A

majority of us are deaf and that is the least of our problems My best to you.

http://www.deafvision.net/alda-fl/

gjroberts@... wrote:

> but when these acoustic neuromas are removed it will leave me without any

hearing and there is nothing I can do to help myself!!

>

[Guest guest]

,

I believe you to be right when making that assumption, ie., making the " NF2

Pill " won't be as profitable as say, finding a cure for cancer because NF2

only affects 1: 40,000. In backs up the phrase of, " money talks " doesn't it?

Mark

----Original Message Follows----

unfortunately, NF2 is an orphan disease (or whatever they call that).

This means that our 1:50 000 rate (or whatever number you decide to use) is

against us. Why develop a drug that will benefit only a limited number of

people? (gotta love capitalism) As well, if they ever did develop such a

pill, can you imagine what the cost is going to be? Over time, it will be

cheaper to have MS than to stay on this pill. I for one know that my

insurance only covers so much for medication a year. What it's going to

come down to is, if you don't want to go deaf, have tumours, etc..., you're

going to need to fork over the cash. And if you can't afford it, well, then

there's always MS, or RS, or whatever for you.

I believe it's very possible for a treatment to be developed. In fact, I

know it will happen. But there will be costs.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

So what is your question, how much damage radiation does to the healthy

tissue? I guarantee you Kondziolka will say minimal. But I also bet you could

find other " experts " who would disagree. I recently got an e mail from Beck,

because she and I are both interested in FRS; She said the lady doc, who does

28 treatments, discouraged her at age 28 from even FRS, because she felt it was

too much exposure to radiation. She recommended Beck check out the Proton

Beam.

Marie

& Ann Cross wrote:

>

>

> can you do me a favour, because there has been a lot of dispute about

> damage to healthy tissue with G/K, FSR can you get the answer for me from

> THE man seeing as you are heading for treatment in the near future. (It's

> important)

> " If you take on this mission the government will not recognise you as an

> American citizen, and will be banished to the waste land of Canada for the

> rest of your life. (with the occasional visit to Aussie). " ~|)))

> Anyone can answer... thanks.

> ....

> .

>

> RE: NF2 Pill ?

>

> >

> >

> > Hey ,

> >

> > Don't forget I put my neck on the line to criticize HEI for their view on

> RS not long ago.

[Guest guest]

My son was on hydroxyurea a year or so ago -- this decision was based upon

research from Germany about its effectiveness on meningiomas.

Unfortunately, as a chemo, it immediately affected his white blood cell

count, which dropped terribly and he developed a 104 degree temperature and

had to be hospitalized and put on antibiotics.

However, I know someone else in the Crew is using it and it is under control.

He also was on Interferon for a short while, but it left him listless and

feeling like he had the flu

Barbara

[Guest guest]

Yes precisely what I am talking about so what is fact and what is B/S.

" WHAT NUMBER OF RADS IS TOO MUCH. "

" WHY DO SURGEONS NOT LIKE OPERATING ON RADIATION PATIENTS "

Get my drift, so what IS fact and what is B/S. Because until that IS

answered we will be just going around and around making summations and have

now real facts.

I have often thought " I wonder how many Rads are used to have a chest

X-Ray? " I have had a zillion of those, perhaps they don't count. As they are

not as concentrated like G/K or FSR...

.

Re: NF2 Pill ?

>

>

> So what is your question, how much damage radiation does to the healthy

> tissue? I guarantee you Kondziolka will say minimal. But I also bet you

could

> find other " experts " who would disagree. I recently got an e mail from

Beck,

> because she and I are both interested in FRS; She said the lady doc, who

does

> 28 treatments, discouraged her at age 28 from even FRS, because she felt

it was

> too much exposure to radiation. She recommended Beck check out the Proton

> Beam.

> Marie

[Guest guest]

Hey ,

It was confirmed recently that I will be off to see THE man in mid April to get

GKed. I will gladly ask any questions you have. Please state (or re-state) what

the question is.

I have never been an American citizen and doubt I ever will be. I have already

been banished to Canada and have spent the last 39 years of my life here (the

first 2 years were spent in a tiny village in southern Italy). It appears I have

nothing to lose by accepting the mission.

----------

From: & Ann Cross

Sent: Saturday, March 04, 2000 10:57 PM

To: NF2_Crewonelist

Subject: Re: NF2 Pill ?

can you do me a favour, because there has been a lot of dispute about

damage to healthy tissue with G/K, FSR can you get the answer for me from

THE man seeing as you are heading for treatment in the near future. (It's

important)

" If you take on this mission the government will not recognise you as an

American citizen, and will be banished to the waste land of Canada for the

rest of your life. (with the occasional visit to Aussie). " ~|)))

Anyone can answer... thanks.

....

.

RE: NF2 Pill ?

>

>

> Hey ,

>

> Don't forget I put my neck on the line to criticize HEI for their view on

RS not long ago.

[Guest guest]

Hi ,

I will give these doctors credit by saying they are very smart. Probably smarter

than any of us. Could we have been neurosurgeons if we wanted to? I doubt I

could have been one (even if my ears worked). However, they don't want to admit

to not knowing something so tend to always give an answer instead of saying

something like " we are not sure " or " we don't know that " .

I want to comment on your questions:

" WHAT NUMBER OF RADS IS TOO MUCH. "

I will ask this question when I see the doctor but I can tell you now they

really do not know. The problem here is that the number of rads will vary from

person to person. Also, they have to give the tumor volume enough rads to kill

the thing or the treatment will be ineffective. I'm sure they could blast the

tumor away with no possibility of re-growth but you may not be able to make to

home afterwards to pay your bill.

" WHY DO SURGEONS NOT LIKE OPERATING ON RADIATION PATIENTS "

Good question and I will ask the doctor.

I took out my handy-dandy book on radiation to give you a few stats:

A chest x-ray gives you 0.007 rads

Typical abdominal x-ray gives you 0.25 rads

6000 miles of high-altitude flying (ie, airplane) gives you 0.01 rads

This assumes your whole body will get the above doses. The rads the doctor

quotes in RS is usually the dose at tumor edges. This dose will then drop off

sharply as you move away from the tumor.

<<WARNING!!! The following contains death stats - read at your own risk!!>>

More stuff you may be interested in from my handy-dandy book:

An acute exposure of 10 rads will cause no detectable effect in normal life

span.

An acute exposure of 25 rads will cause effects only detectable by chromosome

analysis.

An acute exposure of 50 rads will cause minor changes to blood cells.

An acute exposure of 450 rads will cause death within 30 days to half those

exposed without medical treatment. Some may die in a few weeks even with

treatment.

An acute exposure of 1000 rads will cause death within 30 days without medical

treatment. High risk of death in days or weeks even with treatment.

Again, these doses are " whole body " and not just to the tumor volume as in RS.

Even more stuff:

An occupation in Finance has a risk of 1 in 60,000 for death in a given year.

A dose of 0.2 rads ( " whole body " ) per year has a risk of 1 in 12,000 for death

in a given year.

An occupation in Government (including police and fire fighters) has a risk of 1

in 11,000 for death in a given year.

An occupation in Transportation has a risk of 1 in 4,000 for death in a given

year.

An occupation in Construction has a risk of 1 in 3,000 for death in a given

year.

A dose of 2.0 rads ( " whole body " ) per year has a risk of 1 in 1,200 for death in

a given year.

An occupation in Mining has a risk of 1 in 1,100 for death in a given year.

An occupation in Forestry has a risk of 1 in 900 for death in a given year.

What I am trying to point out is, 1) 's comment that chest x-rays don't

count is essentially true because your body can defend itself against low doses,

2) RS can be seen as a risk (but NF2 is a risk), 3) watch out for falling trees!

----------

From: & Ann Cross

Sent: Sunday, March 05, 2000 5:56 PM

To: NF2 Crew

Subject: Re: NF2 Pill ?

Yes precisely what I am talking about so what is fact and what is B/S.

" WHAT NUMBER OF RADS IS TOO MUCH. "

" WHY DO SURGEONS NOT LIKE OPERATING ON RADIATION PATIENTS "

Get my drift, so what IS fact and what is B/S. Because until that IS

answered we will be just going around and around making summations and have

now real facts.

I have often thought " I wonder how many Rads are used to have a chest

X-Ray? " I have had a zillion of those, perhaps they don't count. As they are

not as concentrated like G/K or FSR...

.

Re: NF2 Pill ?

>

>

> So what is your question, how much damage radiation does to the healthy

> tissue? I guarantee you Kondziolka will say minimal. But I also bet you

could

> find other " experts " who would disagree. I recently got an e mail from

Beck,

> because she and I are both interested in FRS; She said the lady doc, who

does

> 28 treatments, discouraged her at age 28 from even FRS, because she felt

it was

> too much exposure to radiation. She recommended Beck check out the Proton

> Beam.

> Marie

[Guest guest]

Good point !

Mark

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: " NF2 Crew " <nf2_crewonelist>

Subject: Re: NF2 Pill ?

Date: Mon, 6 Mar 2000 08:56:31 +1000

Yes precisely what I am talking about so what is fact and what is B/S.

" WHAT NUMBER OF RADS IS TOO MUCH. "

" WHY DO SURGEONS NOT LIKE OPERATING ON RADIATION PATIENTS "

Get my drift, so what IS fact and what is B/S. Because until that IS

answered we will be just going around and around making summations and have

now real facts.

I have often thought " I wonder how many Rads are used to have a chest

X-Ray? " I have had a zillion of those, perhaps they don't count. As they are

not as concentrated like G/K or FSR...

.

Re: NF2 Pill ?

>

>

> So what is your question, how much damage radiation does to the healthy

> tissue? I guarantee you Kondziolka will say minimal. But I also bet you

could

> find other " experts " who would disagree. I recently got an e mail from

Beck,

> because she and I are both interested in FRS; She said the lady doc, who

does

> 28 treatments, discouraged her at age 28 from even FRS, because she felt

it was

> too much exposure to radiation. She recommended Beck check out the

Proton

> Beam.

> Marie

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

,

But perhaps they should be thinking of the repeated treatments for everyone

of us. We have enough going on that each of us is really requiring multiple

surgeries, gamma rays, ....etc.

Sheryn

Re: NF2 Pill ?

>

>

> ,

>

> I believe you to be right when making that assumption, ie., making the

" NF2

> Pill " won't be as profitable as say, finding a cure for cancer because NF2

> only affects 1: 40,000. In backs up the phrase of, " money talks " doesn't

it?

>

> Mark

>

>

> ----Original Message Follows----

>

>

> unfortunately, NF2 is an orphan disease (or whatever they call that).

> This means that our 1:50 000 rate (or whatever number you decide to use)

is

> against us. Why develop a drug that will benefit only a limited number of

> people? (gotta love capitalism) As well, if they ever did develop such a

> pill, can you imagine what the cost is going to be? Over time, it will be

> cheaper to have MS than to stay on this pill. I for one know that my

> insurance only covers so much for medication a year. What it's going to

> come down to is, if you don't want to go deaf, have tumours, etc...,

you're

> going to need to fork over the cash. And if you can't afford it, well,

then

> there's always MS, or RS, or whatever for you.

>

> I believe it's very possible for a treatment to be developed. In fact, I

> know it will happen. But there will be costs.

>

>

>

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

>

[Guest guest]

,

Yes X-rays count. There was a warning put in the newspapers here awhile

back, I wish I had saved it. My AN's were thought to be no big deal to

remove till I mention the Radiation they received. The response and look on

NS faces out of this province says it all to me. HEI said they had a very

difficult time removing my tumor because of the scar tissue. They did an

area 61/2 x 10 on each side of my head. I was told nothing but that I would

very likely hear again. The last 2 years the symptoms are starting to show

themselves. The scary part is they think they did the right thing, or so

they say. The An's were only .7 and .4 cm what were they thinking in

89....Here they still don't have a clue what I'm talking about when I

mention the names of all the rad treatments you guys mention here. Their

jaws drop.

Sheryn

Re: NF2 Pill ?

>

>

> >

> >

> > So what is your question, how much damage radiation does to the healthy

> > tissue? I guarantee you Kondziolka will say minimal. But I also bet

you

> could

> > find other " experts " who would disagree. I recently got an e mail from

> Beck,

> > because she and I are both interested in FRS; She said the lady doc, who

> does

> > 28 treatments, discouraged her at age 28 from even FRS, because she felt

> it was

> > too much exposure to radiation. She recommended Beck check out the

Proton

> > Beam.

> > Marie

>

>

>

>

>

>

[Guest guest]

Hi ,

What type of radiation did you choose and who will do it and where?

Who was the dr. that made the arrangements that enable you to go and did you

have an appointment in the past with this institution?Did you have surgery

the first time around? I can't have anymore radiation myself but others here

in Canada have asked some questions. I'd like to pass the info on to them.

Good Luck to you .

Sheryn

RE: NF2 Pill ?

>

>

> >

> >

> > Hey ,

> >

> > Don't forget I put my neck on the line to criticize HEI for their view

on

> RS not long ago.

>

>

>

>

>

>

>

>

>

[Guest guest]

>Hi guys,

My name is Gareth and I am 22 years old. I was told that I had NF2 when I was

15. During that time I have had two brain tumours and three weeks ago I had a

tumour removed from my spinal cord. I have also got an operation planned for

June of this year to remove an acoustic neuroma from my right ear.

I hear what you are saying about developing a drug for NF2.What's the point when

it affects a small minority of the population worldwide?

I've known that I have NF2 for the past seven years and I still can not

understand how I got it. Neither of my parents display any signs or carry the

faulty gene. So with the odds so great why should I get it. I'm sure everyone

with NF asks themselves that question everyday.

The development of a drug to combat this condition is the only hope I am holding

on to. At the moment I can just see a lifetime of operations ahead and my

quality of life spirialing out of control. I feel so helpless and if anyone has

got any news about developments regarding new drugs, any correspodance would be

gratefully received.

All the best ... Gareth

>

>,

>But perhaps they should be thinking of the repeated treatments for everyone

>of us. We have enough going on that each of us is really requiring multiple

>surgeries, gamma rays, ....etc.

>Sheryn

> Re: NF2 Pill ?

>

>

>

>

> ,

>

> I believe you to be right when making that assumption, ie., making the

" NF2

> Pill " won't be as profitable as say, finding a cure for cancer because NF2

> only affects 1: 40,000. In backs up the phrase of, " money talks " doesn't

>it?

>

> Mark

>

>

> ----Original Message Follows----

>

>

> unfortunately, NF2 is an orphan disease (or whatever they call that).

> This means that our 1:50 000 rate (or whatever number you decide to use)

>is

> against us. Why develop a drug that will benefit only a limited number of

> people? (gotta love capitalism) As well, if they ever did develop such a

> pill, can you imagine what the cost is going to be? Over time, it will be

> cheaper to have MS than to stay on this pill. I for one know that my

> insurance only covers so much for medication a year. What it's going to

> come down to is, if you don't want to go deaf, have tumours, etc...,

>you're

> going to need to fork over the cash. And if you can't afford it, well,

>then

> there's always MS, or RS, or whatever for you.

>

> I believe it's very possible for a treatment to be developed. In fact, I

> know it will happen. But there will be costs.

>

>

>

>

> ______________________________________________________

> Get Your Private, Free Email at <a Target='_new'

Href='http://www.hotmail.com'>http://www.hotmail.com</a>

>

>

>

--------------------

talk21 your FREE portable and private address on the net at

http://www.talk21.com

[Guest guest]

Sheryn

Yes I can understand they're surprise, in 89 Fractionating the treatment was

un-heard of, so I can understand there would be scaring. Don't think I am

dismissing your treatment for at that time it was correct, and fractionating

didn't really start until 93-94. It is from this time on that I am

interested in, especially FSR. which is at the moment the mildest of all Rad

treatments.

The statement that the Rad dept's are say is that healthy tissue is

unaffected, which I can understand to a point, because I still have hearing

and my facial nerve is still unaffected.

is going to have G/K soon I don't know how many Rads are going to be

used but as an example; 3000 rads a G/K helmet has 209 holes ???? some are

turned off so that rads won't pass through sensitive areas. Say 9 just for

easy numbers, divide 3000 by 200 = 150 rads through each hole aiming at the

tumour which added together is receiving the full 3000 rads....

I could be wrong so make it another Q...

.

Re: NF2 Pill ?

>

>

> ,

> Yes X-rays count. There was a warning put in the newspapers here awhile

> back, I wish I had saved it. My AN's were thought to be no big deal to

> remove till I mention the Radiation they received. The response and look

on

> NS faces out of this province says it all to me. HEI said they had a very

> difficult time removing my tumor because of the scar tissue. They did an

> area 61/2 x 10 on each side of my head. I was told nothing but that I

would

> very likely hear again. The last 2 years the symptoms are starting to show

> themselves. The scary part is they think they did the right thing, or so

> they say. The An's were only .7 and .4 cm what were they thinking in

> 89....Here they still don't have a clue what I'm talking about when I

> mention the names of all the rad treatments you guys mention here. Their

> jaws drop.

> Sheryn

[Guest guest]

Tev Dorfman has been on hydroxurea for a year or two; they watch his blood

count, but I am pretty sure his tumor has not grown; Tev if you are out

there, give some input! Marie

Re: NF2 Pill ?

>From: bfrank4fr@...

>

>My son was on hydroxyurea a year or so ago -- this decision was based upon

>research from Germany about its effectiveness on meningiomas.

>

>Unfortunately, as a chemo, it immediately affected his white blood cell

>count, which dropped terribly and he developed a 104 degree temperature and

>had to be hospitalized and put on antibiotics.

>

>However, I know someone else in the Crew is using it and it is under

control.

>

>

>He also was on Interferon for a short while, but it left him listless and

>feeling like he had the flu

>

>Barbara

>

>

>

>

[Guest guest]

Hi Gareth !! Welcome to the crew..

You say that neither of your parents had any sign of the genetic fault ..

Well you have plenty of company here then, this is very common.

Again ! Welcome !! From Marcus, Surfers Paradise,,, Australia

>

>>Hi guys,

>

>My name is Gareth and I am 22 years old. I was told that I had NF2 when I

was 15. During that time I have had two brain tumours and three weeks ago I

had a tumour removed from my spinal cord. I have also got an operation

planned for June of this year to remove an acoustic neuroma from my right

ear.

>I hear what you are saying about developing a drug for NF2.What's the point

when it affects a small minority of the population worldwide?

>I've known that I have NF2 for the past seven years and I still can not

understand how I got it. Neither of my parents display any signs or carry

the faulty gene. So with the odds so great why should I get it. I'm sure

everyone with NF asks themselves that question everyday.

>The development of a drug to combat this condition is the only hope I am

holding on to. At the moment I can just see a lifetime of operations ahead

and my quality of life spirialing out of control. I feel so helpless and if

anyone has got any news about developments regarding new drugs, any

correspodance would be gratefully received.

>

>All the best ... Gareth

[Guest guest]

Hi Sheryn,

I will have GK in Pittsburgh with Dr. Lunsford. My Doctor here in Toronto (Dr.

Tator) recommended GK/Lunsford and his office made the application to OHIP

(Ontario Health Insurance Plan) for funding. I'm a 7 year man. I've had

surgeries in 1979, 1986, 1993 and now in 2000 but this is the first time for RS.

Good thing 7 is one of my lucky numbers (knock on wood). If I get by this year,

I'll be OK for another 7 years (I hope).

Hi ,

What type of radiation did you choose and who will do it and where?

Who was the dr. that made the arrangements that enable you to go and did you

have an appointment in the past with this institution?Did you have surgery

the first time around? I can't have anymore radiation myself but others here

in Canada have asked some questions. I'd like to pass the info on to them.

Good Luck to you .

Sheryn

[Guest guest]

,

FRS may not be as new as '93/'94. I've been reading a book published in the

mid-80's that describes FRS rather well. Perhaps it only got popular in the

90's??

I don't know the dose I'll be getting. The University of Pittsburgh (U of P)

internet site says they have treated 512 AN patients there and " the mean dose to

the margin of the tumor was 15 Gy " . I think 'margin' is a doctor's way of saying

'edge'. The symbol Gy is a 'Gray' which is the new symbol for dose (100 Rad = 1

Gy). So the mean dose they gave was 1500 Rad. I hope I will not be getting much

more than that but I will find out. I suspect the bulk of the patients were

Unilateral AN people. They treated 412 patients with meningiomas and the mean

dose was 15 Gy (perhaps everyone gets 15 Gy??).

I'm not sure how they deliver the dose either. The U of P internet site talks

about multiple 'isocenters " . It appears these isocenters are the focal points of

the gamma rays. I think they give the dose in a few short bursts rather than a

single big one. Each burst may have a different focal point on the tumour. This

would be particularly important when the tumour has an irregular shape. Kinda

like FRS done at one sitting.

Hey Brain, I can tell you are not a mathematician.... 3000/200 = 15 )

----------

From: & Ann Cross

Sent: Monday, March 06, 2000 9:54 PM

To: NF2_Crewonelist

Subject: Re: NF2 Pill ?

Sheryn

Yes I can understand they're surprise, in 89 Fractionating the treatment was

un-heard of, so I can understand there would be scaring. Don't think I am

dismissing your treatment for at that time it was correct, and fractionating

didn't really start until 93-94. It is from this time on that I am

interested in, especially FSR. which is at the moment the mildest of all Rad

treatments.

The statement that the Rad dept's are say is that healthy tissue is

unaffected, which I can understand to a point, because I still have hearing

and my facial nerve is still unaffected.

is going to have G/K soon I don't know how many Rads are going to be

used but as an example; 3000 rads a G/K helmet has 209 holes ???? some are

turned off so that rads won't pass through sensitive areas. Say 9 just for

easy numbers, divide 3000 by 200 = 150 rads through each hole aiming at the

tumour which added together is receiving the full 3000 rads....

I could be wrong so make it another Q...

.

Re: NF2 Pill ?

>

>

> ,

> Yes X-rays count. There was a warning put in the newspapers here awhile

> back, I wish I had saved it. My AN's were thought to be no big deal to

> remove till I mention the Radiation they received. The response and look

on

> NS faces out of this province says it all to me. HEI said they had a very

> difficult time removing my tumor because of the scar tissue. They did an

> area 61/2 x 10 on each side of my head. I was told nothing but that I

would

> very likely hear again. The last 2 years the symptoms are starting to show

> themselves. The scary part is they think they did the right thing, or so

> they say. The An's were only .7 and .4 cm what were they thinking in

> 89....Here they still don't have a clue what I'm talking about when I

> mention the names of all the rad treatments you guys mention here. Their

> jaws drop.

> Sheryn