Down But Not Out

Well sometimes it takes some great luck to come out on top, and if today’s MRI is any sign, we are very lucky indeed!  We are so thankful for all the prayers, positive vibes, whatever you guys are doing, that are making this thing actually shrink in size.  Now before I get too far ahead of myself, this is a deadly disease, and I’d be kidding myself if I thought for one second this could be the end of it…but just for today we’re treating it like it is!

Here’s the MRI that was taken on September 7th, 2014.  You can see here that the brain is pretty messed up.  The swelling is somewhat out of control, which you can see by the brain folds not being present in the brain.

9-7-2014 7-45-10 PM

So fast forward to today, October 2nd 2014, and here is what the brain looks like today.



If you look at those you see the brain folds starting to come back.  Still not all the way back, but partially back.  You might also notice that there was a mid-line shift in the first position, which should have caused me to lose my balance…well my wife corrected me, I wasn’t able to get out of bed and required almost a week in the hospital stay 🙂

So at that point they decided to put me on Avastin. It’s something I said I’d never do, but I’m doing it now.  I guess the story there is sometimes you just have to trust your Dr.  So right now I’m taking a half dose of Avastin every 3 weeks.  I’m currently using Avastin to reduce the swelling, caused by the Ippy and Nivo. It really isn’t that bad.  I go in, get it, and for the next 24 hours I don’t really feel like eating much (I can still eat a lot), but then I get over it and move on.  The main side effect, is called the sexy voice, because it makes me horse :).  They are also weening me off the steroids and that should be complete in about 4 weeks.

When talking to the Dr today, she mentioned that some of the patients on this trial Ippy and Nivo, had actually gone through a biopsy, and they confirmed that it was the immune system doing it’s job on the tumor.  So all we can do is wait at this point for my next MRI on November 17th, 2014.

Well that’s about it.  Sorry for not posting in so long, it has been a long ride filled with highs and lows.  Just keep doing whatever it is you’re doing, and we are hoping this all turns out OK!

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