glioblastoma multiforme grade IV

mgreggsmith
mgreggsmith Member Posts: 22
in Brain Cancer #1
In October 2006 I had a seizure and passed out. After a series of tests it was confirmed that I had a brain tumor. I had brain surgery and was diagnosed with a malignant grade IV glioblastoma multiforme (GBM). I then had radiation and monthly chemotherapy in pill form with Temodar.

At the time of my diagnosis the doctors at Oregon Health and Sciences (OHSU) in Portland, Oregon speculated I had 3 to 18 months to live, with 12 months being the norm with this diagnosis. (Senator Kennedy, with the same diagnosis lasted 14 months.)

It is now out 53 months since my diagnosis and I am doing fine. I have MRIs every four months - and all have been clear. There is no indication that the tumor area is active. (By the way, I wondered if the original diagnosis was incorrect, so I asked for a 'second opinion.' A team at OHSU reviewed my brain tissue - and the original diagnosis was correct.)

Apparently I am in a very small group of 1% - 2% who have lived this long with a grade IV GBM. However, there are cases of people living 5, 7 and 10 years with this diagnosis. The doctors at OHSU are mystified about why I am still alive. There are the mystical theories. And there is the scientific theory. The later is that there is something about my personal genetic makeup that allows all the therapies to be unusually effective. But as one person said recently about my unusual status: "We don't know what we are doing. This is uncharted ground."

What I try to do is live my life with intention. I try to keep my stress low. I try to eat right. And....I have two glasses of pinot noir each evening! As Winston Churchill said: "Never, never, never give up."

Comments

  • prayingforacure11
    prayingforacure11 Member Posts: 1
    #2
    Inspiration
    Your story is very inspiring. My mother was diagnosed with Stage IV Glioblastoma at the end of August of 2010. She had surgery to remove 3 tumors from her frontal lobe on September 3, 2010. She was doing great, gamma knife radiation for 6 weeks along with chemo. She hit a bump last month, where her confusion came back and left sided weakness, only to find two blood clots in her leg and a new 3x3 growth in her parietal lobe. I fear the worst, and am so grateful to see that people can live with this cancer. My mother is only 63 and has been healthy all of her life and to see her give up the will to live is so hard to bear with. So thank you, for the inspiration of beating the "statistic" diagnosis the doctors give. Thanks.
  • mgreggsmith
    mgreggsmith Member Posts: 22
    #3
    prayingforacure11 said:

    Inspiration
    Your story is very inspiring. My mother was diagnosed with Stage IV Glioblastoma at the end of August of 2010. She had surgery to remove 3 tumors from her frontal lobe on September 3, 2010. She was doing great, gamma knife radiation for 6 weeks along with chemo. She hit a bump last month, where her confusion came back and left sided weakness, only to find two blood clots in her leg and a new 3x3 growth in her parietal lobe. I fear the worst, and am so grateful to see that people can live with this cancer. My mother is only 63 and has been healthy all of her life and to see her give up the will to live is so hard to bear with. So thank you, for the inspiration of beating the "statistic" diagnosis the doctors give. Thanks.

    Family
    I'm glad she has you. Family and friends are critical.
  • KMPonder
    KMPonder Member Posts: 102
    #4
    So great to hear your story.
    So great to hear your story.

    My husband was just recently diagnosed with a GBM in the optic chiasm. He's blind because of it. It's his third type of malignant brain tumor in the last 25 years. He lived 22 years tumor-free from his first mixed cell germinoma. Endured more radiation to combat three inoperable AAs in 2009/10. Now the radiation of 1987 has presented the GBM.

    Even through this we continue to have hope. Never, ever give up hope.
  • mgreggsmith
    mgreggsmith Member Posts: 22
    #5
    KMPonder said:

    So great to hear your story.
    So great to hear your story.

    My husband was just recently diagnosed with a GBM in the optic chiasm. He's blind because of it. It's his third type of malignant brain tumor in the last 25 years. He lived 22 years tumor-free from his first mixed cell germinoma. Endured more radiation to combat three inoperable AAs in 2009/10. Now the radiation of 1987 has presented the GBM.

    Even through this we continue to have hope. Never, ever give up hope.

    Hope
    I can imagine the suffering your husband and you have been through. I'm very sorry. There is no way to make sense of it. All one can do is surrender to the reality and try to live one's life with as much grace and love as is possible.

    I am not religious but I believe we live within something unseen and bigger than us. I believe that prayer puts us in touch with whatever it is. There are many names for it. But within that realm we are all connected at a deep level. So call on family, friends and those you don't even know for positive thoughts and encouragement for your husband and you. I wish you both the very best. You will be in my prayers tonight.

    Gregg
  • mgreggsmith
    mgreggsmith Member Posts: 22
    #6
    KMPonder said:

    So great to hear your story.
    So great to hear your story.

    My husband was just recently diagnosed with a GBM in the optic chiasm. He's blind because of it. It's his third type of malignant brain tumor in the last 25 years. He lived 22 years tumor-free from his first mixed cell germinoma. Endured more radiation to combat three inoperable AAs in 2009/10. Now the radiation of 1987 has presented the GBM.

    Even through this we continue to have hope. Never, ever give up hope.

    Hope
    I can imagine the suffering your husband and you have been through. I'm very sorry. There is no way to make sense of it. All one can do is surrender to the reality and try to live one's life with as much grace and love as is possible.

    I am not religious but I believe we live within something unseen and bigger than us. I believe that prayer puts us in touch with whatever it is. There are many names for it. But within that realm we are all connected at a deep level. So call on family, friends and those you don't even know for positive thoughts and encouragement for your husband and you. I wish you both the very best. You will be in my prayers tonight.

    Gregg
  • careg
    careg Member Posts: 1
    #7
    Im in Oregon

    I read your story and wanted to know more about your experience ot ohsu. I live in Medford and have gbm But I expect to beat it.. Just finished chemo  and rad treatment and now have my break.... CAn you inpire me with what you tjhnk helped yuu get pasted the five year mark?

     

    Carrie

     

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