Many of you may or may not know of our our daughter, Mattea. She was

diagnosed with ATRT in July 2006. We obtained one of the last openings

in THE PROTOCOL that many people are now basing their own treatment off

of. Mattea will be 2.5 in November and is doing wonderfully. She is 27

months from diagnosis and 1 year off of treatment. Her most recent

scan, on August 25th, was stable. As far as she is concerned, things

couldn't be much better.



When we realized we were pregnant with our second child, we underwent

extensive genetic testing in hopes of ruling out suspicion that our

experience with ATRT was the result of a genetic issue. Unfortunately,

we were told that Mattea, and my husband Mike both have the INI-1 gene

mutation (and in their case, a total deletion). Further testing

revealed that our second child, Mackenzie, does not have this mutation.



One of the primary issues that Dr. Biegel (Children's Hospital of

Philly) is trying to address is, why do some people with INI-1 suffer

from these vicious cancers while others with the same mutation develop

benign schwannomas and neurofibromas. So far, it's a mystery.



Anyway, we are now a multi-generation family with the presence of this

gene mutation and the following: ATRT, possible medulloblastoma

(diagnosed in the early 1960s), Schwannoma, and Neurofibromas.



Has anyone else had an experience similar to this?  I know it's a long

shot, but I'm trying to gather any information I can that could be

anywhere close to what we're experiencing right now.



Thanks,

Tara Lesorgen

Tara,



Great question, and good area to explore further.  There hasn't been alot of

discussion about genetic issues on our ATRT board, and it is an area of critical

importance.



Could EVERYONE answer the following question:



Has your child had the genetic testing?

What were the results?

For those with the INI1 deletion, is it just in your child or also in a parent?

Any with a family history of schwannomas or neurfibromas?





I will go first.Andrew Padfield

INI 1 deletion in the tumor and in all cells

Neither parent has the deletion

Andrew's great grandfather died from a brain glioma in his 60s.







To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT









Many of you may or may not know of our our daughter, Mattea. She was diagnosed

with ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL

that many people are now basing their own treatment off of. Mattea will be 2.5

in November and is doing wonderfully. She is 27 months from diagnosis and 1 year

off of treatment. Her most recent scan, on August 25th, was stable. As far as

she is concerned, things couldn't be much better.When we realized we were

pregnant with our second child, we underwent extensive genetic testing in hopes

of ruling out suspicion that our experience with ATRT was the result of a

genetic issue. Unfortunately, we were told that Mattea, and my husband Mike both

have the INI-1 gene mutation (and in their case, a total deletion). Further

testing revealed that our second child, Mackenzie, does not have this mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is

trying to address is, why do some people with INI-1 suffer from these vicious

cancers while others with the same mutation develop benign schwannomas and

neurofibromas. So far, it's a mystery. Anyway, we are now a multi-generation

family with the presence of this gene mutation and the following: ATRT, possible

medulloblastoma (diagnosed in the early 1960s), Schwannoma, and

Neurofibromas.Has anyone else had an experience similar to this? I know it's a

long shot, but I'm trying to gather any information I can that could be anywhere

close to what we're experiencing right now. Thanks,Tara Lesorgen











_________________________________________________________________

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E04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008



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

My daughter Sophiella has INI 1 gene mutation

Neither parents have it

No known related disease in either of families



--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:

>

>

> Tara,

>

> Great question, and good area to explore further.  There hasn't been alot of

discussion

about genetic issues on our ATRT board, and it is an area of critical

importance.

>

> Could EVERYONE answer the following question:

>

> Has your child had the genetic testing?

> What were the results?

> For those with the INI1 deletion, is it just in your child or also in a

parent?

> Any with a family history of schwannomas or neurfibromas?

>

>

> I will go first.Andrew Padfield

> INI 1 deletion in the tumor and in all cells

> Neither parent has the deletion

> Andrew's great grandfather died from a brain glioma in his 60s.

>

>

>

> To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08 +0000Subject: [ATRT]

Schwannomas and ATRT

>

>

>

>

> Many of you may or may not know of our our daughter, Mattea. She was diagnosed

with

ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL that

many

people are now basing their own treatment off of. Mattea will be 2.5 in November

and is

doing wonderfully. She is 27 months from diagnosis and 1 year off of treatment.

Her most

recent scan, on August 25th, was stable. As far as she is concerned, things

couldn't be

much better.When we realized we were pregnant with our second child, we

underwent

extensive genetic testing in hopes of ruling out suspicion that our experience

with ATRT

was the result of a genetic issue. Unfortunately, we were told that Mattea, and

my

husband Mike both have the INI-1 gene mutation (and in their case, a total

deletion).

Further testing revealed that our second child, Mackenzie, does not have this

mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is

trying to address

is, why do some people with INI-1 suffer from these vicious cancers while others

with the

same mutation develop benign schwannomas and neurofibromas. So far, it's a

mystery.

Anyway, we are now a multi-generation family with the presence of this gene

mutation

and the following: ATRT, possible medulloblastoma (diagnosed in the early

1960s),

Schwannoma, and Neurofibromas.Has anyone else had an experience similar to this?

I

know it's a long shot, but I'm trying to gather any information I can that could

be

anywhere close to what we're experiencing right now. Thanks,Tara Lesorgen

>

>

>

>

>

> _________________________________________________________________

> Want to read Hotmail messages in Outlook? The Wordsmiths show you how.

> http://windowslive.com/connect/post/wedowindowslive.spaces.live.com-Blog-

cns!20EE04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008

>

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

>

My child Joey had the genetic testing.

He does have the INI 1 deletion.

No one else in our family was tested and will not be tested.





In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,

mkees73@... writes:











Tara,



Great question, and good area to explore further. There  hasn't been alot of

discussion about genetic issues on our ATRT board, and it  is an area of

critical importance.



Could EVERYONE answer the following  question:



Has your child had the genetic testing?

What were the  results?

For those with the INI1 deletion, is it just in your child or also  in a

parent?

Any with a family history of schwannomas or  neurfibromas?





I will go first.Andrew Padfield

INI 1 deletion in  the tumor and in all cells

Neither parent has the deletion

Andrew's  great grandfather died from a brain glioma in his 60s.



To: _ATRT@...@ya_ (mailto:ATRT@...) :

_DegoBoo02@..._ (mailto:DegoBoo02@...) : Thu, 16  Oct 2008

05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT



Many of you  may or may not know of our our daughter, Mattea. She was

diagnosed with ATRT  in July 2006. We obtained one of the last openings in THE

PROTOCOL that many  people are now basing their own treatment off of. Mattea

will be

2.5 in  November and is doing wonderfully. She is 27 months from diagnosis

and 1 year  off of treatment. Her most recent scan, on August 25th, was stable.

As far as  she is concerned, things couldn't be much better.When we realized

we were  pregnant with our second child, we underwent extensive genetic testing

in  hopes of ruling out suspicion that our experience with ATRT was the

result of  a genetic issue. Unfortunately, we were told that Mattea, and my

husband

Mike  both have the INI-1 gene mutation (and in their case, a total

deletion).  Further testing revealed that our second child, Mackenzie, does not

have

this  mutation. One of the primary issues that Dr. Biegel (Children's Hospital

of  Philly) is trying to address is, why do some people with INI-1 suffer from

these vicious cancers while others with the same mutation develop benign

schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a

multi-generation family with the presence of this gene mutation and the

following: ATRT, possible medulloblastoma (diagnosed in the early 1960s), 

Schwannoma,

and Neurofibromas.Many of you  may or may not know of our our daughter,

Mattea. She was diagnosed with ATRT  in July 2006. We obtained one of the last

openings in THE PROTOCOL that many  people are now basing their own treatment

off

of.



__________________________________________________________

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









**************BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD

today!

(http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\

www.indianajones.com/site/index.html)





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

My son, Jonathan Shaddix, had the genetic testing which showed that

the mutation is present in every cell (Rhabdoid Predisposition).

Neither my wife or I have the mutation, and there is no known history

of tumors on either side of the family.



Jeff Shaddix





> Could EVERYONE answer the following question:

>

> Has your child had the genetic testing?

> What were the results?

> For those with the INI1 deletion, is it just in your child or also in a

> parent?

> Any with a family history of schwannomas or neurfibromas?

>

my son Michael had the INI 1 deletion test and his results were negative. he

also had the p53 test and those results were negative as well. michael does have

the ini 1 deletion in the tumor but not anywhere else throughout his body.

michael's grandmother(my mother) was diagnosed with a glioblastome multiforme

grade 4 in august 2008. she is 60 years old







----- Original Message ----

From: "KCJoeNSuz@..." <KCJoeNSuz@...>

To: ATRT@yahoogroups.com; atrt@yahoogroups.com

Sent: Thursday, October 16, 2008 8:18:18 AM

Subject: Re: [ATRT] Schwannomas and ATRT





My child Joey had the genetic testing.

He does have the INI 1 deletion.

No one else in our family was tested and will not be tested.





In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,

mkees73@hotmail. com writes:



Tara,



Great question, and good area to explore further. There hasn't been alot of

discussion about genetic issues on our ATRT board, and it is an area of

critical importance.



Could EVERYONE answer the following question:



Has your child had the genetic testing?

What were the results?

For those with the INI1 deletion, is it just in your child or also in a

parent?

Any with a family history of schwannomas or neurfibromas?



I will go first.Andrew Padfield

INI 1 deletion in the tumor and in all cells

Neither parent has the deletion

Andrew's great grandfather died from a brain glioma in his 60s.



To: _ATRT@yahoogroups. ATRT@ya_ (mailto:ATRT@yahoogroups. comFrom) :

_DegoBoo02@aol. DegoBoo_ (mailto:DegoBoo02@aol. comDate) : Thu, 16 Oct 2008

05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT



Many of you may or may not know of our our daughter, Mattea. She was

diagnosed with ATRT in July 2006. We obtained one of the last openings in THE

PROTOCOL that many people are now basing their own treatment off of. Mattea will

be

2.5 in November and is doing wonderfully. She is 27 months from diagnosis

and 1 year off of treatment. Her most recent scan, on August 25th, was stable.

As far as she is concerned, things couldn't be much better.When we realized

we were pregnant with our second child, we underwent extensive genetic testing

in hopes of ruling out suspicion that our experience with ATRT was the

result of a genetic issue. Unfortunately, we were told that Mattea, and my

husband

Mike both have the INI-1 gene mutation (and in their case, a total

deletion). Further testing revealed that our second child, Mackenzie, does not

have

this mutation. One of the primary issues that Dr. Biegel (Children's Hospital

of Philly) is trying to address is, why do some people with INI-1 suffer from

these vicious cancers while others with the same mutation develop benign

schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a

multi-generation family with the presence of this gene mutation and the

following: ATRT, possible medulloblastoma (diagnosed in the early 1960s),

Schwannoma,

and Neurofibromas. Many of you may or may not know of our our daughter,

Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last

openings in THE PROTOCOL that many people are now basing their own treatment off

of.



____________ _________ _________ _________ _________ _________ _

Want to read Hotmail messages in Outlook? The Wordsmiths show you how.

_http://windowslive. http://windohttp ://windowslihttp ://windohttp: //wihttp:

//w_



(http://windowslive. com/connect/ post/wedowindows live.spaces. live.com-

Blog-cns) !20EE04FBC541789! !20EE04FBC! 20EE04FB! 20EE04FB! 20EE04FBC5417



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



************ **BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD

today!

(http://pr.atwola. com/promoclk/ 100000075x120932 6865x1200539441/ aol?redir=

http://www. indianajones. com/site/ index.html)



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













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

Charlie Walsh

INI1 Gene Deletion in tumor and all cells

Neither parents or other three siblings has the deletion

My second cousin died of a brain tumor when she was 2.  Not sure of the exact

diagnosis.



Another issue with Charlie:  When he was 5 months old, he was initially

diagnosed with Rhabdomyosarcoma by various hospitals (San Francisco, St. Louis

and others).  After further review, the FINAL diagnosis was "benign tumor - 

unknown".  He was born with this tumor, which protruded from his left shoulder. 

Just another piece in the puzzle.  We have talked to our doctor about this and

she definitely believes the original tumor was somehow related to his genetic

condition.  Dr. Biegel knows of this.





________________________________



From: ATRT@yahoogroups.com on behalf of KCJoeNSuz@...

Sent: Thu 10/16/2008 7:18 AM

To: ATRT@yahoogroups.com; atrt@yahoogroups.com

Subject: Re: [ATRT] Schwannomas and ATRT







My child Joey had the genetic testing.

He does have the INI 1 deletion.

No one else in our family was tested and will not be tested.





In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,

mkees73@... <mailto:mkees73%40hotmail.com>  writes:



Tara,



Great question, and good area to explore further. There hasn't been alot of

discussion about genetic issues on our ATRT board, and it is an area of

critical importance.



Could EVERYONE answer the following question:



Has your child had the genetic testing?

What were the results?

For those with the INI1 deletion, is it just in your child or also in a

parent?

Any with a family history of schwannomas or neurfibromas?



I will go first.Andrew Padfield

INI 1 deletion in the tumor and in all cells

Neither parent has the deletion

Andrew's great grandfather died from a brain glioma in his 60s.



To: _ATRT@... <mailto:_ATRT%40yahoogroups.ATRT> @ya_

(mailto:ATRT@... <mailto:ATRT%40yahoogroups.comFrom> ) :

_DegoBoo02@... <mailto:_DegoBoo02%40aol.DegoBoo> _

(mailto:DegoBoo02@... <mailto:DegoBoo02%40aol.comDate> ) : Thu, 16 Oct

2008 05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT



Many of you may or may not know of our our daughter, Mattea. She was

diagnosed with ATRT in July 2006. We obtained one of the last openings in THE

PROTOCOL that many people are now basing their own treatment off of. Mattea will

be

2.5 in November and is doing wonderfully. She is 27 months from diagnosis

and 1 year off of treatment. Her most recent scan, on August 25th, was stable.

As far as she is concerned, things couldn't be much better.When we realized

we were pregnant with our second child, we underwent extensive genetic testing

in hopes of ruling out suspicion that our experience with ATRT was the

result of a genetic issue. Unfortunately, we were told that Mattea, and my

husband

Mike both have the INI-1 gene mutation (and in their case, a total

deletion). Further testing revealed that our second child, Mackenzie, does not

have

this mutation. One of the primary issues that Dr. Biegel (Children's Hospital

of Philly) is trying to address is, why do some people with INI-1 suffer from

these vicious cancers while others with the same mutation develop benign

schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a

multi-generation family with the presence of this gene mutation and the

following: ATRT, possible medulloblastoma (diagnosed in the early 1960s),

Schwannoma,

and Neurofibromas.Many of you may or may not know of our our daughter,

Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last

openings in THE PROTOCOL that many people are now basing their own treatment off

of.



__________________________________________________________

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_http://windowslive.http://windohttp://windowslihttp://windohttp://wihttp://w_

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



**************BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD

today!

(http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\

www.indianajones.com/site/index.html

<http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\

www.indianajones.com/site/index.html> )



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

Paige -



I wonder if Charlie's shoulder tumor was a schwannoma or neurofibroma.  I know

nothing about these two tumors, except that apparently they are also associated

with INI1 deletion.



http://skydrive.live.com/welcome.aspx?provision=1?ocid=TXT_TAGLM_WL_skydrive_102\

008



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

Hi,

Thanks for your email. Short reply to your answer as I am soon of to bed.



It makes me wonder if we have this gene. I know that they have tested us but not

sure about what and so on. My daughter, diagnosed in aug 2003, first with

neurofibromatis typ 2, but later on they discovered it was ATRT, still with one

tumor left but standing still since then.



We did MRI on everyone in our family and when I got pregnant again, they took

bloodtest to check - but not sure for what. I will, if you think it is ok,

forward your email to my daughters doctor and ask what/if they checked for that

specific gene.



Olivia is cancerfree and of treatment since summer 2004. You can read a short

summary of our story in english on our website, but please let me know if I

could forward your message and if you have any questions.



Maria

http://groups.msn.com/OliviaSamuel/_whatsnew.msnw







To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT









Many of you may or may not know of our our daughter, Mattea. She was diagnosed

with ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL

that many people are now basing their own treatment off of. Mattea will be 2.5

in November and is doing wonderfully. She is 27 months from diagnosis and 1 year

off of treatment. Her most recent scan, on August 25th, was stable. As far as

she is concerned, things couldn't be much better.When we realized we were

pregnant with our second child, we underwent extensive genetic testing in hopes

of ruling out suspicion that our experience with ATRT was the result of a

genetic issue. Unfortunately, we were told that Mattea, and my husband Mike both

have the INI-1 gene mutation (and in their case, a total deletion). Further

testing revealed that our second child, Mackenzie, does not have this mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is

trying to address is, why do some people with INI-1 suffer from these vicious

cancers while others with the same mutation develop benign schwannomas and

neurofibromas. So far, it's a mystery. Anyway, we are now a multi-generation

family with the presence of this gene mutation and the following: ATRT, possible

medulloblastoma (diagnosed in the early 1960s), Schwannoma, and

Neurofibromas.Has anyone else had an experience similar to this? I know it's a

long shot, but I'm trying to gather any information I can that could be anywhere

close to what we're experiencing right now. Thanks,Tara Lesorgen













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

Hi,

Thanks for your email. Short reply to your answer as I am soon of to bed.



It makes me wonder if we have this gene. I know that they have tested us but not

sure about what and so on. My daughter, diagnosed in aug 2003, first with

neurofibromatis typ 2, but later on they discovered it was ATRT, still with one

tumor left but standing still since then.



We did MRI on everyone in our family and when I got pregnant again, they took

bloodtest to check - but not sure for what. I will, if you think it is ok,

forward your email to my daughters doctor and ask what/if they checked for that

specific gene.



Olivia is cancerfree and of treatment since summer 2004. You can read a short

summary of our story in english on our website, but please let me know if I

could forward your message and if you have any questions.



Maria

http://groups.msn.com/OliviaSamuel/_whatsnew.msnw







To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08

+0000Subject: [ATRT] Schwannomas and ATRT









Many of you may or may not know of our our daughter, Mattea. She was diagnosed

with ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL

that many people are now basing their own treatment off of. Mattea will be 2.5

in November and is doing wonderfully. She is 27 months from diagnosis and 1 year

off of treatment. Her most recent scan, on August 25th, was stable. As far as

she is concerned, things couldn't be much better.When we realized we were

pregnant with our second child, we underwent extensive genetic testing in hopes

of ruling out suspicion that our experience with ATRT was the result of a

genetic issue. Unfortunately, we were told that Mattea, and my husband Mike both

have the INI-1 gene mutation (and in their case, a total deletion). Further

testing revealed that our second child, Mackenzie, does not have this mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is

trying to address is, why do some people with INI-1 suffer from these vicious

cancers while others with the same mutation develop benign schwannomas and

neurofibromas. So far, it's a mystery. Anyway, we are now a multi-generation

family with the presence of this gene mutation and the following: ATRT, possible

medulloblastoma (diagnosed in the early 1960s), Schwannoma, and

Neurofibromas.Has anyone else had an experience similar to this? I know it's a

long shot, but I'm trying to gather any information I can that could be anywhere

close to what we're experiencing right now. Thanks,Tara Lesorgen













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

Hi All -



Zoe Earlywine does NOT have the INI-1 deletion. Her docs have noted

that she has atypical ATRT. We have not been tested. No history of

brain tumors on either side of our family, that I am aware of

(definitely no immediate family members - parents, grandparents,

siblings, aunts/uncles).

Hi Mette,



Can you give more specifics as to what the doctors mean when they say "Atypical

ATRT?"



Michelle







To: ATRT@...: metteearlywine@...: Thu, 16 Oct 2008

20:15:27 +0000Subject: [ATRT] Re: Schwannomas and ATRT









Hi All -Zoe Earlywine does NOT have the INI-1 deletion. Her docs have notedthat

she has atypical ATRT. We have not been tested. No history ofbrain tumors on

either side of our family, that I am aware of(definitely no immediate family

members - parents, grandparents,siblings, aunts/uncles).











_________________________________________________________________

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E04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008



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

oh, i think they mean it's atypical because she does NOT have the gene

deletion, whereas most kiddos with ATRT do have the deletion, in the

tumor cells or all cells.



they took a while to decide on ATRT as the diagnosis - and sent

pathology off to "another lab" - i'm assuming Dr. Biegel, but maybe

not. (i suppose i ought to check in on that!)



prior to their consultation with the other lab, they told us they had

narrowed the pathology down to either ATRT or choroid plexus

carcinoma, but were leaning towards ATRT.



--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:

>

>

> Hi Mette,

>

> Can you give more specifics as to what the doctors mean when they

say "Atypical ATRT?"

>

> Michelle

>

>

>

> To: ATRT@...: metteearlywine@...: Thu, 16 Oct 2008 20:15:27

+0000Subject: [ATRT] Re: Schwannomas and ATRT

>

>

>

>

> Hi All -Zoe Earlywine does NOT have the INI-1 deletion. Her docs

have notedthat she has atypical ATRT. We have not been tested. No

history ofbrain tumors on either side of our family, that I am aware

of(definitely no immediate family members - parents,

grandparents,siblings, aunts/uncles).

>

>

>

>

>

> _________________________________________________________________

> Want to read Hotmail messages in Outlook? The Wordsmiths show you how.

>

http://windowslive.com/connect/post/wedowindowslive.spaces.live.com-Blog-cns!20E\

E04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008

>

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

>

Joey was considered an Atypical ATRT- I thought it was because it was

located in his neck versus the CNS or kidney.  He does has the gene  deletion.



Hopkins could not diagnose his cancer- they sent it out to CHOP, Harvard  and

to Mayo.  CHOP was the facility that diagnosed him.  His first  biopsy was

done on 2/14/07, the second was soon after and he wasn't diagnosed  until

3/14/2007.



Suzanne





In a message dated 10/17/2008 3:25:27 P.M. Eastern Daylight Time,

metteearlywine@... writes:









oh, i think they mean it's atypical because she does NOT have the  gene

deletion, whereas most kiddos with ATRT do have the deletion, in  the

tumor cells or all cells.



they took a while to decide on ATRT  as the diagnosis - and sent

pathology off to "another lab" - i'm assuming  Dr. Biegel, but maybe

not. (i suppose i ought to check in on that!)



prior to their consultation with the other lab, they told us they  had

narrowed the pathology down to either ATRT or choroid  plexus

carcinoma, but were leaning towards ATRT.



--- In _ATRT@..._ (mailto:ATRT@yahoogroups.com) , M Kees  <mkees7

3@...> wrote:

>

>

> Hi Mette,

>

> Can you give more specifics as to what the doctors mean when  they

say "Atypical ATRT?"

>

> Michelle

>

>

>

> To: ATRT@...: metteearlywine@ To: ATRT@...: metteearlywine@<WBR

+0000Subject: [ATRT] Re: Schwannomas and ATRT

>

>

>

>

> Hi All -Zoe Earlywine does NOT have the INI-1  deletion. Her docs

have notedthat she has atypical ATRT. We have not been  tested. No

history ofbrain tumors on either side of our family, that I am  aware

of(definitely no immediate family members -  parents,

grandparents,grandparents,<WBR>sibligr

>

>

>

>

>

>  ____________  ____  ____  ____  ____  ____

>  Want to read Hotmail messages in Outlook? The Wordsmiths show you  how.

>

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

>









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You read my mind.  I'm going to discuss with the doctors.



________________________________



From: ATRT@yahoogroups.com on behalf of M Kees

Sent: Thu 10/16/2008 4:09 PM

To: atrt@yahoogroups.com

Subject: RE: [ATRT] Schwannomas and ATRT









Paige -



I wonder if Charlie's shoulder tumor was a schwannoma or neurofibroma. I know

nothing about these two tumors, except that apparently they are also associated

with INI1 deletion.



http://skydrive.live.com/welcome.aspx?provision=1?ocid=TXT_TAGLM_WL_skydrive_102\

008

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