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 http://ilovelakemac.com/ 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: http://clinicaltrials.gov/show/NCT01988896 ). 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 (http://house.wikia.com/wiki/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!
This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.