I think this is a terribly hard conversation that we all must have
and we all must think about. Mark and I had extremely high hopes
going into Charlie's MRI (17 months post diagnosis). A spot was
found (3.37mm), however, it seems that this spot is located in the
left eyeball. Charlie's original tumor was wrapped around his left
optic nerve and extended back into the brain. There is no other
literature where the AT/RT presents itself in the optic nerve, so
Charlie is a pioneer, unfortunately. At this point, Charlie is
going to have an EUA (exam under anesthesia) to be performed by his
Opthalmologist, Dr. Lyon. Dr Lyon strongly believes that the spot
could be scar tissue, as it is in the same place where he snipped the
optic nerve away from the eye. This has given us tremendous hope and
it is what we are praying for. That said, we have to be prepared if
it is not scar tissue and it is, indeed, a tumor. Charlie will also
undergo a PET scan once we see the results of the EUA. During our
discussion with Charlie's Oncologist, Dr. Max, the Gamma Knife
Treatments was brought up. She had a patient many years ago that had
a relapse and did the Gamma Knife and is glad to say the patient is
still alive and well today. We are also doing our research to find
other treatments that have worked. Charlie has had Methotrexate as
part of his Intrathecal chemo cocktail in the spine (at least 10
times). I also am aware of the Doxorubicin Continuation Therapy.
Hopefully we'll have more information once we know what we're dealing
with on Monday.

Please say a prayer for scar tissue!!!!

Thanks, Michelle and Toby, for starting this very important
discussion.

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