stacy0611's Journey with Brain and Spinal Cord Tumors in Adults

Patient: Brain and Spinal Cord Tumors in Adults

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Female, Age: 47

  1. 1
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Diagnosed

    Oh No

    I had inital symptoms that my local ER felt needed a CT scan. Nothing showed. My ER doctor suggested I make an appointment with my family doctor for a follow up MRI. We discussed my symptoms possibly being MS. I had my MRI and found out about my tumor about 2 weeks later.

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  2. 2
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    After the inital 4 or 5 days, I was able to see Neuro-oncology and a Neuro-surgeon. We agreed that a biopsy would be done the following morning. I woke up to a primary Gr. 2, astrocytoma, filtrative tumor that took up most of 1/4 of my brain.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Clinical Trial

    I was very sure I wanted to do the most agressive treatment I could and it came down to being in a study group for low grade brain tumors. It was not guarantee I would get the drug, but I was not "risking" anything by being radomized. I would get 5 1/2 weeks of radiation and randomized to see if I would get Temador.

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  4. 4
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Other

    Drug or Chemo Therapy

    Was randomized into Temodar study and ended up with chemo and radiation.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    External radiation

    Radiation

    Was randomized into Temodar study and ended up with chemo and radiation. 5 1/2 weeks of radiation, 5 days a week and 7 days a week of Temodar.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Chemo brain

    Side Effects

    During Chemo - chemo brain. It has gotten worse since my treatement!

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  7. 7
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Fatigue (tiredness)

    Side Effects

    During Chemo - some fatigue, but I lived on my own, in a new city, for a month and a half while I was doing treatment. I went to appointments, radiation, took chemo.

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  8. 8
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    I still have anemia 6 months after leaving chemo.

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  9. 9
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    I ended up with a 103. fever, in isolation after my first 5 day cycle of Temodar (Did bulk temodar treatment with radiation and was to do 5 days on/28 days with temodar for 12 months)

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  10. 10
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Hair loss (alopecia)

    Side Effects

    Lost 1/2 a head of hair due to radiation/chemo (right side is tumor/affected)

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  11. 11
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Low platelet counts (thrombocytopenia)

    Side Effects

    2nd month of temodar - platelets were low.

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  12. 12
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    Could not continue 3rd month of Temodar as it was too toxic. My white cells and platelets were too low.

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  13. 13
    • stacy0611
    • Experience with Brain and Spinal Cor...
    about 5 years ago
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    Decision Point

    I opted to leave chemo and any further treatment 5 months into diagnosis.

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