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    bbr54 wrote on carm's wall

    Thank you carm. I have purchased the book. I appreciate this advice.

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    • carm's Avatar

      You are welcome. I have sent a few patients to Burzynski although they were cervical patients, and I know how great his work is too. His study is only for GBMs and AAAs and he has had wonderful success in treating them as well. When I first read Ben Williams book, I was skeptical, but he gave full disclosure including pics of his scans the same way Burzynski does. When I saw Hannahs Anecdote, her boyfriend asked Burzynski if he could film everything and he gave him full access to film whatever he wanted. I have spoken to Burzynski in the past when I worked in research, and I know one of my cervical patients' oncologist called him and asked him to treat her patient because there was nothing she could do for her anymore, and he agreed. There are options for you. However, Burzynski is expensive because he can't accept insurance because his drug is not approved. The cost is $25,000. a year for everything. I made my patients go to www.giveforward.com and start raising money to have just in case, and post their giveforward page on fb and they all got the money they needed in time. Hannahs story was just a year ago and she is tumor free. You have options and its' not over until YOU say it is. If there is anything I can do to help you, let me know, Carm.

      about 8 years ago
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    bbr54 wrote on cherlind's wall

    Hello cherlind -

    Thank you for your response. I will let you know if I would like to meet and talk. I am just starting the chemo again this week. It is nice to see the hope on this site.

    Thank you,

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    bbr54 wrote on cvbinrags's wall

    Hello -
    I have recently been diagnosed with glioblastoma. I has surgery and have completed the 6 weeks of radiation and chemo. I am scheduled to start the 6 month phase of chemo this week. I would love to hear your story. How did you handle the 6 months of chemo? Have you had any growth? Have you participated in any clinical trials? How did you deal with the anger of the diagnosis?


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    bbr54 asked a questionBrain and Spinal Cord Tumors in Adults

    Survival rates

    17 answers
    • CAS1's Avatar


      I love that mantra "This is just unacceptable" I will be using this too...Love this...This should be the rally call for cancer becuase of the low amount of government funding for certian cancers..


      about 8 years ago
    • tervin's Avatar

      I am coming up on 1 year of my grade IV GBM diagnosis and doing well with no regrowth as of November. When the tumors were found I was knocking on Heaven's door. Luckily they were found and 100% resected. I agree with the person who posted that you are not a statistic. That is the main thing my oncologist kept telling me. Best of luck to you.

      about 8 years ago
    • Suzy-q's Avatar

      I am a 5 year survivor (in October) of an Anaplastic Astrocytoma Grade III. My tumor was on the right front parietal lobe, effecting my speech & thought processes, and some days basic motor skills usually by the end of the day, or when I'm worn down. My balance has bad days as well...Think of a pin ball :) that's me in a door way...I used to get so mad at that, now I laugh! But I am doing so much better than my surgeon expected!

      almost 7 years ago
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