Anaplastic Astrocytoma - Reaching out - Pre surgery questions

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  • GCP
    GCP Member Posts: 1
    #22
    momsworld said:

    Hi Ashley
    My name is Tina and I have a 13yr old daughter with anaplastic astrocytoma. I will give you some history about our experience. My daughter, then 12, was having severe headaches. We brought her to her PCP and was told it was hormonal and to wait it out. a few months go by with these headaches and then she starts to vomit everytime she would wake up. Brought her back to her PCP and was told it was virtigo. Ok, that would explain her dizziness and vommiting, but not the headaches. A few days after that appt, she was vommiting everytime she moved her head, so I called her PCP and demanded a ct scan. The next day she had one .
    We were not even out of the hospital parking lot after the ct scan and the doctor called. She said that there was a mass in her brain about the size of a golfball and to go home and pack a few things and to go to Dartmouth medical center in Lebanon,NH where a neurosurgeon would be waiting for us. Everything moved so fast. She was admitted on the spot and given meds to reduce swelling of her brain and 4 days later, march 27, 2010 she had her 1st crainiotomy. those were the worst days of my life, so I thought then. 3 days after her surgery they did a MRI and they found more tumor, so she had her 2nd crainiotomy.
    She did very well with recovery and we were home about a week later. we were told that she had AA3 about 3 weeks later after they sent out the tumor to different hospitals as there were conflicting results. After diagnosis, I went into survival mode. I did not even know what I was doing really, my body just did what it had to do to survive. She started with oral chemo (Temodar) and had 35 radiation treatments. Her next MRI was scheduled for sept and we thought for sure that things would be fine, but to our surprise, the cancer was growing back during treatment. They scheduled another surgery to remove new growth. We had the best surgeon this time and a 4 hour surgery took 8 hours. She was very careful and very thorough. After that surgery we were told there was nothing more they could do and she was going to die. I did not like that answer and flipped out on them and demanded her records and took her out of there. We went to Dana Farber/Jimmy Fund clinic in Boston and they put her on a new but FDA approved treatment and she has been cancer free for 10 months now. Just cut her to partial treatments. she is doing really well now. My email is sata816@comcast.net if you would like to talk or if you have questions. I would love to talk to you. Tina

    Anaplastic Astrocytoma
    Hi Tina - so glad your daughter is doing well. I wept with joy reading that bit of news. Cancer is HELL!!!

    I am desperately looking for a contact at Dana Farber for Anaplastic Astrocytoma --- Is this something you might feel comfortable revealing?

    Keep up the good fight and remember to take care of yourself too!

    GCP

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