22 y.o. with a grade II oligo

Hi all,

I was recently diagnosed in May 2011 with a grade II oligodendroglioma (not anaplastic). A week after I graduated from college at the age of 22, I had a seizure while I was on a Birthright trip in Israel. Fortunately, my brother was bunking with me and heard me yelling and convulsing so he got the EMT and they brought me to the hospital. After 2 CT scans and an MRI, they determined it was a tumor and flew me back to America to be with my family for the biopsy.

Back in South Florida, we had more MRI's done to confirm the tumor and find the best location for a biopsy. The tumor looked like a dumbbell, so the biopsy took out two samples from each of the bell regions. They determined it was grade II and slightly infiltrative, located in the left frontal lobe of my brain. Surgery was not advised because it is too risky to harm my brain. During the biopsy, they also took samples to test for the 1p/19q chromosomal co-deletions and the report said that 1p was deleted but not 19q. In other words, when I start my chemotherapy, it wouldn't respond as well as it would have if 19q had been deleted.

I went to Duke University for the Preston Robert Tisch Brain Tumor Center to consult with Dr. Henry Friedman's team. My neuro-oncologist there is Dr. Katy Peters and she is starting me on chemo on July 4 for a year on Temodar, 80mg PO. Interestingly, I have several doctors working together for my case, including my local oncologist, my neuro-surgeon (for the biopsy and other), my Duke neuro-oncologist, and my PCP. Oy. I will have MRI's every 2 months and go up to Duke to visit with the doctors to check my scans.

I am thrilled that I caught this thing so early and that it isn't worse. Believe me, I am so appreciative of my life and I've always really believed in living life to my fullest potential. I am just very frustrated with this whole scenario because I've always been so active and ready to take on the world, and now I feel like I have limitations. I was supposed to leave on June 16 for a Peace Corps assignment in Africa for 2 years and now I am not able to do that. I was planning on doing medical school after my service. I wanted to do international work for poverty-stricken areas of the world without access to medical care. I feel like these things have in someway been limited now.

At my meager age of 22, while I want to focus on the positives, I can't help but think about the possibilities of this thing in my head. I'm not planning my life around this cancer. In fact, I'm going to beat this. I know it. I'm going to exercise and maintain a great diet during chemo so I'm healthy and with minimal symptoms. I'm going to research as much as I can to prevent it from coming back. But all of the research I've done since I was diagnosed has indicated maximum survival times of 20-30 years of life, if lucky. If I had been diagnosed at 35-40, it would seem a lot easier. But I haven't even begun my time in this world and I'm already thrown a curve ball. On top of that, my girlfriend and I are not sure how to deal with this in our relationship.

Anyway, this is basically just an introduction to the site and putting myself out there. I'm sure others have similar stories and I've been reading many of them. I'd love to meet some of you if there are similar stories! Does anyone have some advice for anything I've mentioned?

Thanks!
Chersen

Comments

  • 3 Comments sorted by Votes Date Added
  • Hey Chersen,
    I got your message yesterday. I'll write you back in a message and we'll chat. Welcome to the team brother!
  • tvdxertvdxer Community Member
    Hello,

    I was diagnosed with the same condition in October 2009 when I was 23. I had both the 1p and 19q chromosomal deletions; 1p is really instrumental in predicting response to treatment, not 19q; however, the two losses are often simultaneous so they call it the "1p/19q deletion". Like you, I had a generalized tonic-clonic (grand mal) seizure, but in a class of all places, followed by an MRI which showed a large, partially enhancing lesion on my left frontal lobe. I had surgery 12 days after the seizure, which removed about 70-80% of the tumor. I made the mistake of switching my care to a local oncologist, who told me I have 10 years to live if lucky, set up an appointment for an MRI three months after, and wished me good luck. Thankfully, I switched back to having a neuro-oncologist from the same hospital where I was operated on treat me, who put me on 12 cycles of Temodar. Meanwhile, I graduated on time (in May of 2010). I completed the chemotherapy in January of 2011 and as of my last MRI, on May 9th, 2011, my tumor was stable.

    Temodar is one of the more benign chemotherapy regimens. It won't cause hair loss and is unlikely to make you really sick. The only real symptoms I experienced with it were nausea and fatigue on the (sometimes) 3rd, 4th, and 5th days of taking it each cycle, plus for about two or three days after.

    Like you, I really had high hopes for my future before diagnosis. In fact, I was going to study abroad for my final semester in Ecuador to lend my degree title ("Languages and International Studies") a bit of credibility. My dream career was the foreign service ... which is not going to happen now (I couldn't ever pass the medical clearance). I was in the process of applying for graduate school and had just sent out an e-mail asking my professors for recommendations. I didn't do any of those things.

    What is worse is the way my life came tumbling down after commencement because of things totally unrelated to my tumor or treatment. My family's house partially burnt down, displacing us from home. One of my underage siblings stabbed another person while drunk. Another one of my siblings made a fake suicide attempt in order to get money for drugs from my mother. Our family business collapsed. Our rental properties (associated with the family business) also went empty and are now in ruin. A whole bunch of things were stolen from me, rendering me unable to pay for basic expenses. If parts of my life unrelated hadn't deteriorated so much after the diagnosis, I think I would be better able to cope with my tumor.

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