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Schwannomas and ATRT   Message List  
Reply | Forward Message #178 of 183 |
RE: [ATRT] Schwannomas and ATRT

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.

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2008>

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






[Non-text portions of this message have been removed]
Thu Oct 16, 2008 9:24 pm

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lily.walsh
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Forward 		Message #178 of 183 |
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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... 		taraboo02
Offline Send Email 		Oct 16, 2008
12:11 pm

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...
M Kees
mkees73
Offline Send Email 		Oct 16, 2008
12:16 pm

My daughter Sophiella has INI 1 gene mutation Neither parents have it No known related disease in either of families ... about genetic issues on our ATRT...
babyella418
Offline Send Email 		Oct 16, 2008
6:04 pm

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...
KCJoeNSuz@...
suzsudo
Offline Send Email 		Oct 16, 2008
12:18 pm

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...
ShadMan
jshaddix2
Offline Send Email 		Oct 16, 2008
6:04 pm

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...
Rachel Perez
rhp74
Offline Send Email 		Oct 16, 2008
6:04 pm

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...
Walsh, Paige P.
lily.walsh
Offline Send Email 		Oct 16, 2008
6:04 pm

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...
M Kees
mkees73
Offline Send Email 		Oct 16, 2008
9:09 pm

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...
Maria Bölja
boelja
Offline Send Email 		Oct 16, 2008
6:07 pm

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...
Maria Bölja
boelja
Offline Send Email 		Oct 16, 2008
6:07 pm

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...
isisreturning2m
Offline Send Email 		Oct 16, 2008
9:03 pm

Hi Mette, Can you give more specifics as to what the doctors mean when they say "Atypical ATRT?" Michelle To: ATRT@...:...
M Kees
mkees73
Offline Send Email 		Oct 16, 2008
9:08 pm

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...
isisreturning2m
Offline Send Email 		Oct 17, 2008
7:25 pm

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...
KCJoeNSuz@...
suzsudo
Offline Send Email 		Oct 17, 2008
9:20 pm

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...
Walsh, Paige P.
lily.walsh
Offline Send Email 		Oct 16, 2008
10:25 pm
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