To: Family & Friends

Date: August 25, 2014

Subject: Clinical trial update

This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.

Hi Everyone,

It’s starting to feel like the end of summer here and the beginning of the beautiful fall season here in Colorado. Caitlin has a week of kindergarten under her belt and seems to be doing great. Heather and I walk her the few blocks up to school every day, which is really nice. Caitlin and I went to a Rockies game with another dad and daughter yesterday – we made it through all 9 innings, though the last 2.5 were spent eating an ice cream helmet sundae. We are heading up to Lake McConaughy for labor day weekend with Heather’s parents and another family. Expectations are already set – we’ll be sleeping on the beach in a trailer with sand in everything. It should be a fun trip.

I’m 3 weeks in on my clinical trial (here are the details: ). It’s an infusion every 2 weeks and pills twice a week. After the first infusion I had a wicked headache for a day or so, but I didn’t experience that after the second infusion. I’m told another local participant had the same experience and hasn’t had the headache since, so hopefully I have the same experience. The primary side effect I’ve experienced is fatigue – I’m sleeping more and needing to go to bed earlier. The facial rash and diarrhea have been pretty well managed with additional medication.

Overall I think I’m tolerating the trial drugs pretty well. My blood work looks very solid and I haven’t had to reduce dosage like some trial participants have. I was able to participate in a golf tournament with a client on Tuesday afternoon last week, just one day after my Monday infusion (though I then needed to rest a bit on Wednesday).

I’ve been experiencing some intermittent back pain for the last month or so, and it got pretty bad this weekend. When I went in for my blood draw and clinic visit today they prescribed Oxycodone for me. I took one this afternoon and am feeling much better. I’m hoping that I’ll be using these somewhat occasionally rather than turning into Gregory House ( We’ll be doing a scan in the near future to get a better sense of what is causing the back pain, but it’s too early to gauge if the trial drugs are being effective or not. We’ll hope to start getting a sense of effectiveness about 8 weeks in.

I hope you all have a great labor day weekend!

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