← Return to astrocytoma in cerebellum, need advice

spangles (@spangles)

astrocytoma in cerebellum, need advice

Brain Tumor | Last Active: Jun 24, 2018 | Replies (17)

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Welcome Spangles.
Thank you for including the details of your diagnosis and a picture of your side effects in this first post. I, too, hope that other members on this forum who have astrocytomas will be able to provide insight through their experiences. Please meet @cleahy85 @lynda1992 @jkenser @pilocysticadult32 @myminnie @spammy and @helendee.

Spangles, good for you for advocating for yourself when you knew something wasn’t right. Indeed pilocytic astrocytoma is rarer in adults. You may be interested in reading this discussion too.
– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

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Replies to "Welcome Spangles. Thank you for including the details of your diagnosis and a picture of your..."

Thanks, Coleen. How would I get in touch with the other people you mentioned? I really could use some advice on what to expect and how long it will last.
I see Dr. Buckner at Mayo in Rochester, and like most docs he says everybody is different when I ask what to expect. Just finished my first 5-day Temodar (300 mg daily) cycle since completing six weeks of radiation with Temodar in Rochester. It makes me feel awful, Coupled with feeling seasick and weak, I can’t eat and can barely navigate across the room.

I checked out all the members you listed and none are active so I do not know if I should contact them. Plus, my tumor is listed as only a “diffuse astrocytoma, grade indeterminate”, The pathology considered a pilocytic astrocytoma, but it lacked classic features such as “biphasic appearance, Rosenthal fibers, and/or eosinophilic granular bodies”.
I don’t know where else to look for advice. Even some help on how to deal with Temodar would be much appreciated.

Live one day at a time. Be thankful for each and every day! We are both brain tumor survivor’s!! My surgery was 25 years ago, already. I had an intraventricular pilocytic astrocytoma. Since it was benign, I wasn’t required to have radiation or chemo. Sorry, I can’t help you there. My new problem is I started having grand mal seizures, again. No neurologist has been able to give me an answer as to why. Yes, it’s very frustrating. I’m also in unchartered territory. How many patients are still alive this many years later? Very few. If any. Have you ever heard of the American Brain Tumor Association? (ABTA.org) Please check out their web-site. It’s awesome! You may find some answers there to your questions.

Hi @lynda1992 I am Scott and while it was my wife who had the brain tumor for 14+ years, I was the one who had a series of grand mal seizures. I agree with you the not knowing is tough, especially when we tend to live in a world that more often than not makes ‘snap’ decisions and recommendations when it comes to healthcare. The source or sources of my seizures were never identified I was on Dilantin for years and then over another year they weaned me off. I’ve only had one series since then, but the memory of them is never far from my mind.

Wishing you continued strength & peace!

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