Grade III: Anaplastic Oligodendroglioma lifespan?

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  • Markpotter
    Markpotter Member Posts: 2
    #202
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    Very similar diagnosis

    My son was daignosed with a ODG grade 3- in early 2015 with a poor prognosis from the specialists though his general neuro-oncologist was more upbeat, but still pretty depressing. He also had no co-deletions so it was felt chemo would not offer benefits. Surgery was successful. He is now almost 3 years after diagnosis and scans still show no progression, though we feel his concentration and memory may have been affected, possibly by radiotherapy.

    How has your son fared since?

  • Markpotter
    Markpotter Member Posts: 2
    edited December 2017 #203
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    cindysuetoyou said:

    So glad you are doing well
    Thank you for your post. I am always so happy when I read that someone is overcoming and winning the battle against cancer--especially oligodendrogliomas. You keep up that great fight!

    It breaks my heart to write this--my son that I love with all of my heart lost his battle. Almost 3 1/2 years after being diagnosed, he died on October 15th. He fought so hard and he was so brave and courageous. I'm sick with grief and I'm trying to pick up the shattered pieces of my life.

    It brings me a measure of happiness, though, when I read accounts like yours and I know that someone has been able to win and to live.

    Love and blessings to you
    Cindy in Salem, OR

    Your son

    I'm so sorry to hear this , and not to have realised i could scroll through the postings before posting my own message. I hope you have beeen able to rebuild your own strength since your loss. I know how difficult it's going to be for me.

  • pframp
    pframp Member Posts: 1
    #204
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    12 year survivor TODAY!

    I was diagnonsed with oligodendroglioma in 2005 - 12 years ago (at age 30).  The tumor was in my left frontal lobe, crossing over into the right frontal lobe, which meant it had been there for 5-10 years.  Removal of the tumor was not an option.  I had been married for 9 years and had a 3 year old daughter and 13 month old son.  Amazingly, when I was diagnosed, I was at Mayo Clinic and my treatment team had just finished researching the effects of radiation along with chemotherapy for slow growing brain tumors relating to years of survival.  This research wasn't released until April 6th, 2016.  Fortunately, I was a patient at Mayo and these research findings were already known when I was diagnosed in 2005.  I had radiation and chemotherapy with oral Temodar, then Temodar alone for 10 months.  I was told that I had approximately "10+ years" of life.  It has now been 12 years (today) since I was diagnosed and I continue to not have have any significant changes on my MRIs!  Praying that all of you are given a bit hope from my story!

  • tarawiseg
    tarawiseg Member Posts: 3
    edited August 2018 #205
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    tylerbeam1 said:

    The 1p19q chromosome
    The 1p19q chromosome deletions are published as a deciding factor when a doctor tries to determine life expectancy, but I think it's foolish that he would say such a thing. I'm a three-time, ten-year brain cancer survivor with a AO III. Sugery in '99, surgery, 15 months of chemo and 33 rounds of radiation in '03 and surgery and year of chemo in '08.

    More importantly, at 33, I'm the proud father of two amazing children (four and two) and have a great job at Brown-Forman here in Lousiville, Ky. Obviously what kind of medicinal treatment you recieve is crucial, but I believe a positive outlook is just as important. While during treatment in '03 and '08 I trained for half-marathons and did pretty well in both... I haven't changed much as far as lifestyle goes and I'm keeping it that way for as long as I can.

    Both mentally and physically I've been fortunate that very little has changed and, but I understand much of that is simply due to tumor location ... needless to say I've been fortunate.

    I'm also being treated at Duke and have scans every few months to make sure the ol' tumor is still sleeping peacefully. I guess my long-winded answer to your original question is yes. You can far outlive the "traditional" life expectancy of an AO III, and live a productive and full life at that.

    Hope this helps in the least bit.
    Tyler

    HI-from louisville also

    LOUISVILLE, Ky Here!

    My dad was Diagnosed two weeks ago, wanted to see how you were doing and why You went to Duke? We are currently scheduled to see doc at CBC group with Baptist. My dad is 61

    Thanks

    Tara

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