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






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