The title of this post really isn't fair because there aren't any trials to clinical trials. Well, maybe that's just me.

I feel like a pilgrim, which in addition to holy references is a traveler or wanderer to a foreign place. My journey into clinical trials is most certainly a pilgrimage. It is also mystical and holy because I choose it to be.

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I call my participation in trials *Hope in a Test Tube* but in truth it's raw research that most likely won't have any effect on me - positive or negative. Researchers make generous mention of the humanitarian investment we patients make when we participate, and that's a valid emphasis. Nonetheless, we creative types are dreamers, so I prefer to stir in an element of hope with the trials I enter.

The first trial I entered was sponsored by Fibrogen, which I believe is considered a smallish pharmaceutical. The smaller pharmaceuticals invest with a goal of discovering something of interest that the larger pharmaceuticals might want to purchase.

The Fibrogen trial seemed more invasive. Well, it actually was. Any time I have a honking huge needle inserted in my arm with a mysterious liquid infused into my body... well, that's invasive! The protocols weren't nearly as rigid as my current trial, though a doctor had to be present at the onset of an infusion because if something was going to go wrong it was going to happen fast. My first trial was also Phase 1 with no placeboes - essentially one generation from the lab rats. Didn't bother me a whit. I felt infused with hope.

Bristol Myers Squibb (BMS) is huge and with its heft comes a seriousness I hadn't felt before - not for a moment to suggest that Fibrogen isn't very serious about its research. The protocols for the trial with BMS were a bit staggering at first but I've become accustomed to having my body micromanaged. As I've observed before, I'm the healthiest sick person you'll ever meet!

For the first BMS trial dose, I spent the night at Vanderbilt's research clinic (CRC). As with my outpatient visits, I had a private room with a private nurse. The care is always impeccable and utterly serious. I will be taking two pills in the morning and two in the evening. No honking big needles.

Fast Forward: Blood was drawn 13 times. I had 6 ECGs. I was weighed 3 times. All the usual vitals were taken. Sleep was spotty.

That night I reread portions of the Informed Consent Document for Research that patients are given prior this BMS trial. Here is a portion I'd skated over before the trial began:

Your doctor will watch you very carefully for any side effects. However, since BMS-986020 has been given to a limited number of patients, there may be side effects not previously seen, which may be mild or very serious. BMS-986020 has been given to normal human volunteers for up to 7 days.

*gulp* I'd missed that portion earlier and suddenly realized why I felt the weight of seriousness in my room last night. Phase 1 of this trial had been rather small and short term?

Now here's the most important part of this post: I have a terminal illness. There is no treatment. There is no cure. When I'm offered an opportunity to enter a clinical trial, a shot at hope, I don't give a fig (well not much of one anyway) what cautionary words are disclosed. I'm on a pilgrimage of hope. Ask any IPF patient lucky enough to qualify for a clinical trial. Many, many are not accepted. Of note, too, many IPF patients don't invite hope into their lives - and some are fearful of trials.

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I was released at noon and drove home. I'm leaving the mountain in a short while to return to Vanderbilt to draw blood. I plan to spend the night in Nashville because blood has to be drawn on Sunday, too. I return on Wednesday for another overnight with a deja vu schedule.

The FDA has permitted BMS to start this study with only 18 participants instead of the original 30. To date, I am one of 7 nationwide to be enrolled. After this portion of the study is complete, BMS plans to enroll 300 subjects.

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I want to close by repeating something I haven't mentioned in a while: My disease is painless. IPF patients sometimes experience an intolerance to sweet odors and coughing can be an issue. Our lungs are hardening, but it's painless.

Is it too late to mention how much I l-o-v-e-d being weighed 3 times? Gah.

This has been a boring post, but good for me to put down.

As always, thanks for listening.