I'd like to start a discussion about some of the different options for relapse
that other parents might know about.

I think this kind of information is important for all of us to have just in
case. But this discussion is also very pertinenet for one of our ATRT families.
MRI & PET scan recently showed that Jake Dambrauskas has 3 new spots in the same
area as the initial tumor. http://www.caringbridge.org/visit/jakedambrauskas
Jake did ICE chemo with stem cell rescue and radiation.

We have been emailing individually with Jake's parents, Katie & Al, but I
thought the listserve would be a good way to open up this discussion to other
parents that might have ideas.
I suggested the following:

1) methotrexate via ommaya and spinal tap. Joe Slater added methotrexate after
relapse/reoccurrence and his scans have since been clear. I am not sure how the
methotrexate was administered for Joe. IRS-III protocol has it via ommaya and
spinal tap on alternating cycles. http://www.caringbridge.org/visit/joeslater

2) Something with doxorubicin. Studies out of Germany are showing that
doxorubicin is effective with ATRT. Abstract below was presented recently at
ISPNO.

We would also contact Mark Kieran at DFCI Boston and Stu Goldman at Children's
Memorial in Chicago and maybe Peter Phillips at CHOP. All 3 are exceptionally
kind and knowledgeable about ATRT. We would probably also contact St. Jude's
just for kicks. We like and trust our doctor a great deal. But with
reoccurrence/relapse, we'd pound the ends of the earth talking to other docs and
getting more opinions.

So, based on your own personal research or conversations with your oncologist,
what would you consider?

Michelle, m/o Andrew
www.carepages.com andrewpadfieldcarepage

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