Phase One in the Books


Eight weeks have gone by in a flash and just like that, phase 1 of my drug trial is over. All in all I have to say that it went really well, if not pretty darn great!

When I first began eight weeks ago I noticed an immense difference within a just a few days (blind as to what I was on). In hindsight I've realized that it was partly adrenaline since I'd been waiting for that moment for so long and was convinced this new drug would be life-changing.

The adrenaline wore off once I began having my usual health 'hiccups': I still had my joint pain and some bleeding from my lungs, but the bleeds were much smaller and contained. I still caught colds/viruses, but I was able to rebound in a short amount of time. Normally those things would be detrimental and my whole body would go haywire, but on this study drug I felt almost like a 'normal' person getting sick and getting better.

Overall I had more energy (thus able to exercise more), had less exacerbations, better breathing, my PFTs improved 6% (doesn't sound like much, but it's kind of a big deal) and I was even able to smell 3 scents (I haven't had a sense of smell since I was 6 or 7 years old!) I still don't know what I was on--and what I was on is not a cure by any means--but it is a game changer for sure!

Now I've stopped the 'drug' and will have to be off of it for at least eight weeks (phase 2), just in time for the germfest known as the holidays. If during these eight weeks I get sick and need intervention, it may delay the start of phase 3, where I start back up on another version of the study drug or a placebo.

I've said it before, but I have to say it again: I am beyond grateful for this opportunity and the promise this study holds for a wider population of the CF community. L-u-c-k-y!

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