Friends and Family,
If you have ever been a fan of the TV show “Cheers,” this one-word greeting will bring back memories. In most of the episodes Norm walks into the bar and goes to his favorite bar stool. On his way to his seat the whole bar greets him, because he is such a fixture there.
That’s what it has been like making these trips to San Diego for the clinical trial. Shuttle drivers, restaurant workers, and even a couple of TSA agents are becoming more familiar with each trip. So far there have been seven trips in the last eight weeks. That’s a lot of frequent flyer miles!
Is that a bad thing? ARE YOU KIDDING ME??? It means that I’m in the clinical trial!
For all of you who have been asking, I don’t go to San Diego for treatment. My treatment involves taking a single pill every day, which I can do anywhere. The trips to UCSD in San Diego are so that they can poke, prod, sample and scan me. They do this so that they can test the drug’s effectiveness, and so that they can add my side effects to the warning label that will go on the bottle when the drug goes on the market. Speaking of which, here is a list of the side effects that I have noticed:
1. Dry eyes
This is no typo! That is the entire list! This is soooooo not like chemo!
The next question I get asked is, “How long will the trial last?”
The answer is, “I don’t know.”
If it stops working for me, it ends then. If it’s working, I will stay in the trial at least ‘till the drug comes on the market. The plan is to fast-track this drug for approval within a couple of years, instead of the usual seven-year FDA approval marathon. The short-cut is possible because it is a life-saving drug, and testing the drug for safety for another five years doesn’t make any sense. If it gets approved either I’ll keep coming to San Diego as an extension of the clinical trial, or I’ll just get a prescription from my oncologist in Portland. Either way, it’s a win.
I sometimes get asked how much I get paid. The answer: I get to live. ‘Nuff said.
The last question I get asked about the trial is whether I know if I’m getting the real thing, or getting a placebo. Easy answer! There is no control group, and no placebo! Again, for a life-saving drug the rules are different. Thank goodness the FDA got smarter with that rule!
Things just keep getting better. The trips are now starting to thin out. We have two more trips to San Diego in December, one in January, and then the trips will move to six weeks apart. Just in time for the holiday season, the stress of traveling starts decreasing.
I won’t officially know how the drug is working until early December when I get my first CT scan since starting AZD9291, and I hate to jinx it, but I’m feeling pretty good! I think I’m breathing easier, and my “night stalker,” Genevieve, who listens to me breathe at night when I go to sleep, thinks the same. Of course, my track record is about 50/50 with predicting, but at the bare minimum I know that it hasn’t gotten any worse. That’s a win in my book!