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Archive for September, 2013

It’s been 10 months since I’ve written. My apologies. I think I’ve previously mentioned that brain metastasis can lead to a serious lack of thinking. This is not your average brain fog, it’s an inability to read, process information, or even follow a conversation unless it goes slow and easy. There’s no standard time frame for the onset of symptoms and no way to know if treatment will help or not.

So, in a nutshell, here’s what’s been happening.

  • August 2012: while on the Alpharadin clinical trial, I had symptoms that suggested metastasis around the skull or brain. I had tumors in my brain. So I did a course of 12 radiation treatments to the whole brain.
  • Fall 2012: worked with an endocrinologist, followed up with radiation oncologist, finished the Alpharadin clinical trial in late October. Started to lose cognitive sharpness.
  • November 2012 – January 2013: lived with various pain problems and fatigue. Started to feel regular, serious numbness and tingling in my left leg. An MRI at the end of January showed a tumor pressing agains the lumbar spine and sacrum, as well as some expansion of brain mets.
  • February 2013: did a round of 10 radiation treatments to the lower spine.
  • March 2013: did a gamma knife treatment to focus on brain mets.
  • April – June 2013: in addition to Xtandi and one Jevtana infusion, worked with a physical therapist and speech/cognitive therapist to deal with leg problems, balance, and cognitive issues.
  • Things were looking good there for a while. My walking and balance improved, the cognitive therapy was helping me learn how to do mental tasks without having a meltdown, and in general I was finding ways to keep working every day. I had my slow moments and occasional imbalance, but it looked like I would keep improving.

    Then very unexpectedly I woke up one day and my eyes wouldn’t focus. My right eye stayed shut, and when I could open it my two eyes were pointed in opposite directions.

    And so that, in retrospect, was it. No more driving, no more working. In July and August I did 10 more radiation treatments after an MRI showed a new tumor on the left of the brain. This month, September, I’ve been hoping for an improvement but I still can’t see straight and have balance problems. After some seriously low blood counts from so many different radiation treatments, I’m finally able to start back on Jevtana, but cautiously. And I’ve used 90 days of short term disability so we’re switching to long term disability, and I’m no longer employed.

    There just aren’t many more treatment options, yet. But one thing I’ve learned since February 2007 is that this is an amazing time of new drug development. So I’m staying focused on the present, and when something new becomes available I’ll just say “I’ll have one of those, please.”

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