To: Family & Friends

Date: July 30, 2015

Subject: An Eventful Friday Night + New Trial

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,

On Friday afternoon I had my initial interview for the TAS-102 trial. As is standard with these appointments, we reviewed my history, the treatment schedule, side effects (they sound relatively mild), and I signed the consent form to volunteer for the study. From there I needed to get blood work and a CT scan to establish my starting baseline. I was able to get these done and I started the new trial drug yesterday.

The schedule for this trial is a little complicated. It’s a pill rather than an infusion.

Week 1 & 2: take 3 pills in the morning and 3 pills at night for 5 days, then 2 days off
Week 3 & 4: off week – no pills

However, there was one wrinkle. At the beginning of my appointment they took my vitals (height, weight, pulse, blood pressure, and oxygen levels). My oxygen level was too low; below 90 (which supported my anecdotal feelings of shortness of breath, etc. of late).

I called Kaiser and they recommended I go to Urgent Care since it was Friday at 5pm by then. We did so, but ended up at a facility that only offered Urgent Care on Saturday and Sunday. They gave me an oxygen tank and instructed us to go to the ER – basically the nurse said I was risking brain damage because of the low oxygen levels.

So off we went to the ER. My mom was staying with me this past week while Heather and Caitlin were visiting Heather’s family in Minnesota, so she was the lucky one that got to chauffeur and accompany me on this adventure.

At the ER I did my best to convince them to just give me the referral necessary for the oxygen. We were already planning to schedule the CT scan and blood work for this week, so I figured doing as little as possible at the ER was probably best. However, the ER doctor was concerned about blood clots as a potential cause of the low oxygen and wanted to run some blood work as well as a CT scan. I relented, with the caveat that we also do the CT scan I needed for the trial baseline.

The results were as expected: no clots or anything, the cause of the low oxygen was due to “progression of disease” – additional growth in the masses in my lungs.

We were able to get home just before midnight, and the folks that do the home oxygen set-up came over that night to give me a basic kit: a unit for the house with 50 feet of tubing so I can roam around like we did back in the day before cordless telephones. They returned the next day to give us portable oxygen tanks and a unit to refill them as well.

So yeah, our Friday night was pretty awesome!

I had originally hoped to get started on this trial a few weeks ago, but as it turned out my “washout” period (time off from any treatment) ended up being a bit longer than I’d hoped while we waited for a slot to open in the trial. This has giving my fast growing cells a chance to start coming back (including the ones we don’t want). The shortness of breath has been bothering me for a week or so now and my hair started coming back in earnest around the same time.

Hopefully, now that I’m on the trial we’ll get some reduction in the masses in my lungs (as we have in the past) with a matching improvement in my oxygen levels.

Side effects-wise, the new trial shouldn’t cause hair loss like the last one did and my returning hair is coming in much darker than the hair I lost. Maybe it will lighten up again over time. The doctor told me to expect some nausea, and I did have some yesterday in my first dosage. I took an anti-nausea pill for the evening at that seemed to make things better.

So I’ve made it onto the trial – send good wishes for effective results and manageable side effects.

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