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,
As expected, when I had my latest CT scan about 6 weeks ago it showed that the clinical trial I had been on since the beginning of the year was no longer being effective for me. We were expecting this based on some other symptoms, and my doctor and I had already targeted a new trial to try to join. Since that time, I’ve been in a “washout” period – basically a period of no treatment before starting a new trial. They want to make sure that the results they are measuring are from the current trial, and that any other trial drugs have cleared your system. A 4 week period without any treatment is pretty typical.
I spent the month of June negotiating red tape to get an appointment to try to get into a trial for a drug called “TAS-102” based on the recommendation of my doctor at the University of Colorado (who I have been going to for the last 2 clinical trials).
https://en.wikipedia.org/wiki/TAS-102
This trial is at a different medical facility and trying to get me set up in their system was apparently non-trivial. About 2 weeks ago I was finally able to get an appointment booked to interview for the trial. Then a day later I got a call canceling the appointment because they no longer had any open slots in the trial. After taking so long to get the appointment in the first place, I found this exceedingly frustrating. Basically I was all washed out and ready for the next trial, but in need of a trial to join.
Thankfully, I got a call yesterday letting me know that they now had a slot available for the TAS-102 trial. I have an appointment to meet with the doctor who is administering the trial on Friday, July 24th. Hopefully things will go smoothly on both the bureaucratic and medical sides of things and I’ll be able to get going on the new trial soon thereafter.
I’m feeling OK, but can tell I’m no longer on treatment. I’m back to needing a shave every day or two (from once a week), and I seem to have picked up a mild cold which is causing a bit of a cough and a little shortness of breath (both familiar to me from my last washout period). I’ve had some back pain recurrence as well, but this time around it has had some direct causes and I’m better at managing it.
A couple of weeks ago I went camping and slept on an air mattress. That was a mistake. I had to bail and head home a day early to return to my own bed; and it took a few days to get things back under control. I had a similar situation when I flew to Seattle (and back) over the last week. Thankfully, since I’ve been through this (back pain) before, I’ve got a better sense of how to handle it this time around.
For example, I’ve found that using marijuana edibles when I go to bed will give me a solid night’s sleep, and it keeps me away from the unpleasant side effects of morphine pills. I also know how to stagger my pain patches and make judicious use of the hot tub and napping to help keep things under control.
With that in mind, I leave you with my current wish list:
1. an uneventful next week and a half
2. that I’m able to get into the trial
3. that the trial is effective
Thanks!
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