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helendee (@helendee)

It all started with a pilocytic astrocytoma...

Brain Tumor | Last Active: Nov 17, 2018 | Replies (12)

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@colleenyoung

Welcome to Connect, @helendee.
I’d like to introduce you to fellow members who are talking about pilocytic astrocytoma. Please meet @cleahy85 @rossam @markelia @steveninkc @lynda1992. You can learn more about them in this discussion:

– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

Helen, Should you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program.
Has the tumor been confirmed as benign? What further treatment options are being considered? I can imagine that all of you are confused and probably quite frightened as well. We’re here to listen.

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Replies to "Welcome to Connect, @helendee. I'd like to introduce you to fellow members who are talking about..."

Hello Colleen,It was confirmed as benign in 1989.  The tumor that returned at the same place in Dec. 2015 was called Grade 4 despite several benign characteristics.  After a year of treatment it appears that there is now a small recurrence at edge of surgery site.  Treatment options are to 1) remove 98% of recurrence 2) follow with clinical trial med

med BBI608 3) treat with one of targeted meds that attack mutations in my son’s tumor.  He had genetic testing done on tumor.We are petrified and very confused.Thanks.

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