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    melee_me wrote on hlauger's wall

    G'day, just wanted to let you know I'm here - my 26yr old daughter was dx with GBM 5yr 6mths ago! She's XXX fine.

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    Question: regrowth

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    melee_me asked a questionBrain and Spinal Cord Tumors in Adults

    regrowth

    6 answers
    • nethtabitha's Avatar
      nethtabitha

      I think this is a common thought among us. I say live every day like your going to find out its back tomorrow. Live all the life you can!

      almost 4 years ago
    • Fusionera's Avatar
      Fusionera (Best Answer!)

      I have a Grade III Oligoastrocytoma, which is known for its (frequent) recurrences. While I have never sat around stewing as to when it might come back, each time it has returned I face new challenges. The time between each of my recurrences keeps getting shorter (8 years between my 1at & 2nd, 4 more years until my 3rd, and then less than 11 months after I finished chemo this time. I am on battle #5 (recurrence #4) and I've reluctantly come to the conclusion that I have to live with this as a chronic illness (I am 18 years out of my original diagnosis). My mom tells her friends that her daughter has "chronic brain cancer", which of course no one believes is possible.

      I am just aware that each time I may face bad news, there is likely to be a blessing with it, such as a new clinical trial option that may help me. Such was the cae when I had my first recurrence, a mere 7 months after my initial surgery. The timing was perfect for me to be the last enrollee at UCSF on the Temozolomide trial in 1996, following my 2nd surgery thatg April 19th. That trial alone saved my life, and despite 3 additional recurrences, I'm still here to warek havoc!

      almost 4 years ago
    • EllasDaddy's Avatar
      EllasDaddy

      Many different cancers, many different people. I was in remission 5 months and started noticing little pains that didn't seem quite right. I moved my Dr visit up a month. He confirmed what I thought it had come back in two different areas. We were not happy but not as devastated as the first time. My response was what do we do and how soon can we start. Fight the fight the best you can. Speak more with Carm, he is a big help.

      almost 4 years ago
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    melee_me wrote on Bigmama's wall

    Contact me if you want to ask anything, no matter how difficult. I can answer from a mother's perspective

    2 Comments
    • Bigmama's Avatar
      Bigmama

      May I ask what treatment she received and is their a private message option on here ?

      about 4 years ago
    • melee_me's Avatar
      melee_me

      there isn't a private message option I know of. DM me on twitter - @melee_me
      She had brain surgery to remove 5cm tumor, 12 weeks radiation & 6 months temozolide.
      This site http://www.virtualtrials.com/faq/index.cfm has guide for newly diagnosed and heaps of other great info.

      about 4 years ago