heatherpet's Journey with Oligodendroglioma

Survivor: Brain and Spinal Cord Tumors in Adults > Glioma > Oligodendroglioma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 6 years ago, Female, Age: 48

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    After over a year of intense daily headaches and ineffective treatments with migraine medicines, I was referred to a neurologist. The neurologist saw evidence of high fluid pressure in my brain (by examining my eyes). He ordered an MRI. After the MRI, I was told, "We'd like you to see the neurosurgeon upstairs. They found something on the MRI." Those dreaded, vague words - found something - haunted me for the two hours it took for the surgeon to get to me on his schedule. Thank goodness my partner (also a cancer survivor) was with me when I heard the initial diagnosis (which turned out, thankfully, to be wrong): glioblastoma multiforme. A death sentence. I had to stop the doctor mid-sentence to ask if he just told me I was going to die. He said yes. Fortunately, as we found out later, that diagnosis was incorrect. My real diagnosis was anaplastic oligodendroglioma - not fantastic but MUCH more survivable than a GBM.

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  2. 2
    over 4 years ago
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    Surgery

    Procedure or Surgery

    My surgeon was excellent. I had a "stealth craniotomy" (sp?). He reported "100% gross resection of the tumor from my right frontal lobe. This was the best result possible. Side effects: three months of double vision in my right eye (cleared up now); minor short-term memory issues; involuntary twitches in my extremities when laying down and relaxed.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  3. 3
    over 4 years ago
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    Internal radiation

    Radiation

    Radiation wasn't too bad. Since I had radiation to my head, I lost my hair in a weird pattern. Since I still had long hair on the back of my head and was losing all my hair in front, I just cut it all off. A year and a half later, it's still not back to normal...but I'd rather live with imperfect hair than die with a full head of beautiful hair!

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    over 4 years ago
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    Decadron - dexamethosone

    Drug or Chemo Therapy

    This is a steroid medicine given to reduce swelling in my brain. I started taking it immediately after diagnosis and remained on it through surgery, radiation, and chemo. I HATED this drug. It made me extremely weak and ravenously hungry. Instead of losing weight on chemo, which is common, I gained weight since I was so hungry all the time. I was so weak that if I sat down on the floor to play a game with my son, I needed assistance to get back up. I am VERY happy to be off that drug.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I took Temodar for 8 months (plus smaller dosages during radiation). As long as I took my anti-nausea medication, the side effects were minimal. The last few months, I felt nausea even with medication but it was mild with no vomiting. The only time I got sick enough to vomit is when I ran out of my primary nausea medication during a vacation trip.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    over 4 years ago
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    Remission

    Celebration

    I'm in remission! In November of 2011, I finished treatment and both of my oncologists (medical and radiation) declared me in remission. Due to the type of brain cancer I had, they are hesitant to ever say "cured." Whatever. I'll just stay in remission forever and they can call it whatever they want!

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  7. 7
    over 4 years ago
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    Depression/Anxiety

    Side Effects

    This side effect isn't directly drug or treatment related/caused. I am struggling a little bit with how to be a survivor. After my initial diagnosis, I spent about two weeks thinking I was terminally ill. I was devastated - thinking I wouldn't be around to watch my son grow up (he was 6 when I was diagnosed) and that he'd be losing one of his parents. I didn't know how to tell my loved ones. Even though my diagnosis changed, that experience of facing a terminal diagnosis made a huge impact on me. Now that I'm a survivor, I still have anxiety. Since my cancer is more likely to recur than not, I do worry about recurrence. While the whole experience helps me to appreciate life more (cliche but true), that thought of recurrence is always in the back of my mind.

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