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.
We got some bad news about a week ago. I had a CT scan and discovered that the clinical trial I was on was not yielding the results were were hoping for. The scan showed some new growth during the time I was I was on the trial drug and my doctor determined it was best to stop treatment.
The new plan is to start on Regorafenib (I can now spell this correctly without looking it up!), a drug that should help stabilize things while we look for a trial that can hopefully walk back some of the new cancer growth we’ve seen in the past few months. Rogorafenib has some unpleasant side effects so I’m hopeful a new, promising trial can be found soon.
That back pain I mentioned previously? Yeah, it’s probably related to the new cancer growth. We’re still working on figuring out exactly the right dosage and delivery of my pain medication, but feel like we’ve made progress on that front in the last few days. Once I get the pain in check (and the associated constipation from the pain meds under control, etc.), I should be able to make progress on regaining some of the recent weight and strength I’ve lost.
I’ve also decided that this is a good time to take a medical leave of absence from work. I’ll be stepping away and transferring my responsibilities to other folks on the team – we announced this to them today.
I have two work-ish conference trips planned in October and at this time I still plan to attend both of them (Monktoberfest and WordCamp SF). I look forward to seeing some of you there. Beyond that, we’ll be here in Denver. If you are coming through town please drop a note so that we can connect.
Hopefully we’ll find a trial that works well for me and allows me to get back to work and the other things I enjoy in the near future. In the meantime I will be doing my best to take care of myself and enjoy time with family and friends (who have been amazingly supportive – thank you to all of you).
This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.