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

Survivor: Brain and Spinal Cord Tumors in Adults

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 17 years ago, Female, Age: 33

  1. 1
    over 4 years ago
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    Temodar - oral Chomo pill

    Clinical Trial

    I was 16 and did very good with the pill. I remember sleeping more then usual but months prior I had bought concert tickets and RSVPed to a party. I attended both! At the concert, my Mom went and took my Tremodar. She wrapped it in foil to keep the light from it. Right before my favorite band, Hanson, took the stage then I drank down the pills. Needless to say, that starting an addiction with Aquafenia water. I threw up my pills 1 night out of about 40. The worst part was waiting for my doctor for appointments. Being on a test drug then I should not have had to wait more then an hour in the empty waiting room every time. I normally had my appointments back to back (day at the hospital) so there were times that I left before my appointment. At the end, I ended up not making the appointment to wait an hour+ and risk not seeing my Radiologist.

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  2. 2
    over 4 years ago
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    Hair loss (alopecia)

    Side Effects

    I had a few side effects hair loss from the radiation and I got a little tired and threw up once from the chemo.

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  3. 3
    over 4 years ago
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    Misdiagnosed

    Oh No

    As a young child, my Mom was a stay at home Mom and my Dad drove an 18 wheeler nearly 70 hours a week. After not seeing me for very long, my Dad came home from work when I was 7 and noticed that my left eye was not moving correctly. My parents took me to specialist and they diagnosed Daune's Syndrome. The procedure for the diagnose included an MRI but none was given. My parents just told the Dr. that the eye was not bothering me and he just set us on our way. I continued life with Daune's Syndrome, not asking about treatments. My 16th birthday fell on a Saturday and we were setting up for a party. My sister couldn't attach the streamer so I got a chair and when I looked up then I got dizzy. We should had known that I was going to kick cancers butt by the fact that I attached the streamer prior to sitting. That day, I could not keep any food down. It went on for over 2 months because I'd be able to get up and got to school but on Saturday...I got so dizzy that I had to sleep all day because opening my eyes just made me nauseous and run to the toilet to throw up. Easter break, I was sick but had a driving appointment at driving school Tuesday so I went to the appointment, drove for 30 minutes and went home. At home, I didn't feel as bad as the days before but not 100% right. I laid on the sofa eating saltines. My Mom said that if I didn't return to school that I was going to the hospital. I woke up and felt fine, ready for the day back to school but I knew that I needed to go to the hospital. After over 12 hours in hospital and a transport to a bigger hospital then I was finally diagnosed with brain stem cancer.

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  4. 4
    over 4 years ago
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    Surgery

    Procedure or Surgery

    April 27, 2000 was my initial surgery where a biopsy was barely able to be obtained because of the tumor being hard, solid. I assumed from the 9 years prior that I had gone misdiagnosed. February 5, 2002 then I had a cyst (on the tumor) removal surgery. Then in April of 2002 then I had shunt infection. I think that I had 2-3 more surgeries that month exturalizing the shunt to see if it was needed, then removing it and putting in a stent as the drugs were so harsh that they were blowing out my vines fast. Later in 2002, I had to have an implant of a .2 gram weight implanted in my left eye lid to shut it. I was to that if the eye ball drys out that I'd loss it. In 2005, the inplant was falling out of my eye lid so I had a surgery to have it removed.

    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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  5. 5
    over 4 years ago
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    Infection

    Drug or Chemo Therapy

    Vancomycin is such a bruttle drug to your veins. I had to have a stint put in.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    over 4 years ago
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    External radiation

    Radiation

    About 30 days!

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  7. 7
    over 4 years ago
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    Anniversary

    Celebration

    I got a tattoo for my 10th year anniversary. It was also my 26th birthday. Who knows, it could had been my 19th anniversary since I had been misdiagnosed???

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  8. 8
    over 4 years ago
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    Lost loved one

    Loss

    I lost a good bit of body function. In surgery February 5, 2002 then due to Radiation and Chemotherapy then doctors were able to remove 80%-85% of my tumor that had my nerves embedded. I also lost a friend of mine...same age...same diagnosis (Astrocytoma). That could had been me in that coffin. Worse funeral that I've gone to by far.

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  9. 9
    over 4 years ago
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    Getting Back Up

    Decision Point

    All of my decisions were ushered by my parents, not saying that they made them for me. I had 100% of control as long as I was coherent. For the past 5 years after the Dr. told me that 'the tumor looks like a scar on the MRI' then I've had the hardest time picking up my broken dreams and plans for the future being disabled now. And the economy has made it even harder.

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