25 year old female with grade IV glioblastoma

Mem11191
Mem11191 Member Posts: 2
in Brain Cancer #1

Hi-

I was recently diagnosed (September 15th) with a brain tumor; grade IV glioblastoma in the left frontal lobe of my brain. I was having an abnormal headache behind my eyes, nose, and sensation above my teeth which led me to see a doctor, get a CT, MRI, etc.  A few days later I had surgery at the University of Penn and thankfully the surgeon was able to remove about 96%. I am now going through 6 weeks of proton therapy radiation and temodar. I'm looking for someone who has had A similar experience or can offer any positive  support as I continue this journey! 

 

Thank you! 

Comments

  • bjohns09
    bjohns09 Member Posts: 1
    #2
    There's always hope!

    I'm a 29 year old male with stage 3 brain cancer that was on the left frontal area as well. I received brain surgery followed by 6 weeks of radiation and my followup MRI came back clear!

    Now I'm on a long term 12 month chemotherapy course that is 5 days per month. I'm through month 2 and I get another MRI in 2 days. I'm hoping for the best. 

    There is hope! 

  • hksal
    hksal Member Posts: 1
    edited February 2017 #3
    Still kickin' it!

    Hey girl! How are you feeling now? How was your MRI post-radiation? 

    I have a nearly idential story to yours. I was diagnosed with a stage 4 GBM in my right temporal lobe after experiencing excruciating headaches in September 2015 when I was 25. I had surgery at Columbia as well as the 6 weeks of radiation treatment. I then moved in December to Hong Kong where I had a job waiting for me. I am still in HK, on my second year of monthly, 5-day cycles of temodar, and all is clear. I was lucky to be referred to a neurosurgeon in HK, who is amazing and still following the same plan as my team in NYC set forth.

    These days I am still working, exercising, traveling, and partying like any other 27-year-old gal! The monthly temodar does slow me down some times, and my company has been incredible in letting me switch to a part-time schedule of working only 3 days per week. My dad lives in Hong Kong too, so I'm not here alone.

    I have MRIs every 3 months now, and all is stable (knock on wood!). I had a big moment last december, when deciding whether to continue with temodar for another year. I referred to my doctor here, my doctors back at Columbia and a few others at UCLA. All agreed that if my blood work remained healthy, it was wise and safe to continue for another year, at least. 

    My best advice would be to keep yourself busy, physically and mentally. My mom and I did a lot of jigsaw puzzles and watched all of How I Met Your Mother, which helped a lot. Also for me, the drugs really made me loose my appetite, so it was important to make myself eat something even I didn't feel like it. You need your energy. 

    Are you still on steroids? I have some really bizarre stories of the things I did and ate while on those suckers. 

    Reach out to me anytime! Hang in there sister! 

    xx

     

     

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