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gliomatosis cerebri -- what can we expect

rdrichard
Posts: 3
Joined: Oct 2010

Hello,

My wife has gliomatosis cerebri and about two years ago the part that could be removed was. The rest was intertwined in her brain and continues to grow. There does not seem to be a big group of us and if asked I can answer questions on what we experienced so far.

What I would like is to connect with someone who is taking treatment on advanced # 2 tumors. Please post and friend me on this site.

Regards,

Richard

rokaren5
Posts: 14
Joined: Aug 2010

Hi Richard,
gliomatosis cerebri is in my pathology report, but my doctors labeled my tumor Level 3 anaplastic astrocytoma. They tell me its more on the level 2 side than level 3.
My doctor removed part of my temporal lobe, but the tumor also spreads into the fromtal lobe, the thalamus, right basal ganglia, and who knows where else. Basically it's spread all throughout. I think it's the spread out part that makes it gliomatosis cerebri. Mine is also diffuse. I'm only 4 weeks out of chemo & radiation. I'll see my oncologist this week to schedule my first follow up MRI, and he'll also decide if/when I'll do another round of chemo.
I hear a lot of positive feedback, but I have some low days. I'm going to start searching for a support group near me. My husband is a wonderful support, but sometimes I feel like I'm the only person to ever go through this. I would be happy to keep in touch through this journey.

take care,
Karen

alohajimmy
Posts: 7
Joined: Nov 2010

Aloha Richard! There is also another thread for this disease on this website that several of us are using.

riakojohn
Posts: 2
Joined: Jan 2011

my good friend was just diagnosed with this Gliomatosis cerebri and he wants me to go online to findout places where he can go to get help. We live in Canada and anything to help us will be great even if you can call that would be awsome. I really do not know what to do here I'm so worried about him.

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