To: Family & Friends

Date: November 16, 2014

Subject: Next Steps for Me

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,

I’m doing pretty well. My weight and strength are still down from where I’d like them, but I’m enjoying being home with Caitlin. I’m getting in a good nap or two a day as needed with the “may cause drowsiness” label on just about everything I take these days. Sometimes I doze off sitting on the couch while watching a football game; I’ve got all sorts of new skills. I’ve started reading the next books in the Game of Thrones series – these are long books; I’ve got some runway. We had our first snow of the season last week and it’s been absurdly cold the last week and things don’t look much better for next week. I’m looking forward to a thaw in our near future.

It’s been a little while since I’ve written, and a number of things have been in motion.

I’d been exploring a number of clinical trials that had been identified as possibilities, but nearly all of these ended up not being options. I’m hoping that there may be some options through the NCI (National Cancer Institute) that I can still explore.

I had a CT scan at the end of October which showed that my tumors are still finding my lungs to be fertile ground – they have grown and are more numerous than before. There also may be some tumor activity in/around my liver that is concerning. Because of this, we’re considering the Regorafenib treatment to be unsuccessful. However the Regorafenib has been very helpful in managing my pain, so I’ve stayed on it for the last two weeks for that reason.

The cancer center at the University of Colorado has identified 2 new clinical trials I can participate in, and I’m likely to sign up for one of these. I’m working to get a better idea of which one the doctors think will be more effective.

I’ve also got an appointment a week from Monday at the MD Anderson clinic in Houston to talk to their clinical trial folks and see if anything they have to offer might be a good option for me.

Since it looks like I’ll be getting on a clinical trial sooner rather than later, I’ve gone off of Regorafenib as of this weekend. Most all of these trials require a 28 day “washout” period where I’m not on any other treatments before going on their treatment. The last time I took a break from Regorafenib, I started experiencing a lot of back pain. I’m hoping that we’re able to manage the pain OK without it, but I’m definitely a little concerned.

I’m going to be experimenting with my diet a bit as well. It’s been a challenge when one of my problems has been keeping weight on, but going to more of a raw foods/veggie diet probably won’t hurt anything and might help a bit. We’ll see how I do with it.

Hopefully the next trial I get myself on will be successful in reducing the size of these tumors in my lungs/liver. Otherwise my prognosis just isn’t very good.

This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.