End of Chemo / August Health Update

So for most GBM patients, they get a six month course of temozolomide chemotherapy. I was able to get a twelve month course, which as of now has officially ended. If you continue taking the meds you run the risk of getting leukemia. Currently there aren’t any studies that show that continuing temozolomide will help. So right now I’m not interested in pushing it. It’s nice not feeling nauseous and as tired ^_^.

With the ending of chemo, I had to get a PET scan and an MRI sooner than I usually do. Unfortunately a new spot appeared in my MRI this week.  It was in my resection cavity, and we’re hoping that it is radiation necrosis. On one side, radiation necrosis tends to show itself within the twelve months following radiation treatment. I’m past twelve months so it makes me think cancer. On the other side, my PET scan didn’t show anything, so it makes me think radiation necrosis. So just like back in December I have no idea. I have to wait for another scan in four weeks to see if the spot is growing. This time I’m not as stressed for some reason. I kind of feel like I’m tired of getting stressed out.

So over the next four weeks we have to explore paths we can take if the spot is a new tumor. Basically we’ll be looking at different immunotherapy trials to see if we’re interested in any of them, and if I’ll be eligible.

On a non-medical note we finished watching Stranger Things recently on Netflix. Alex and I had such a great time watching that show. I especially loved the soundtrack and all the songs (generally 80s) that were played. One that I had long forgotten about, because at some point I got burned out on Moby, was his song “When It’s Cold I’d Like To Die”. I know it’s probably not the best song to attach to this post, but don’t worry I don’t want to die. I love the cold ^_^. I do want to relax and this song helps with that.

3 Comments

  1. Sandra

    You are a champion of the journey, the hero who holds on, the author of your story, authentic, creative, courageous.

  2. Jessi and Mama(June) Mattie too

    This news is a bummer. But I hope it is like last time and is necrosis and not cancer. My friend Dustin, his Mom is my nurse forever, and we were talking, and she said no longer do they sit on pins and needles, if the news is good, then they celebrate it, if it is bad, they will cross that bridge then, But being a nervous wreck didn’t help them any,
    That sounds alot like the approach your taking, and I so admire that. I worry about things, but then I realized not only am I too tired and sick of worrying.
    You are brave, determined, no matter what news you get. You are truly my inspiration and hero, how you have dealt with all this, I know Alex has been a constant source of support and so glad you found such a special person to be the love of your life,
    Hope you can not stress out as much as possible. Know we are sending positive thoughts and love.
    June and Jessi and Mattie

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