I asked Katie if I could share her encouraging blog from CysticLife about her experience with the clinical drug Denufosol. Check out what she had to say!!
So I headed to the Adult CF clinic at Northwestern/Children's Memorial today for my first study visit after starting on the actual drug in the second phase of the denufosol trial. I was so psyched . . . after hearing about the fantastic PFTs people were having on the drug . . .
So I blow and blow and blow (I have the "honor" of being one of the patients who can blow out ALL of the candles on the computer screen during my PFTs. I swear it's from years of blowing up balloons and practicing with so many PFTs and really has nothing to do with my lung capacity . . . ha ha. . .). And look at my numbers . . . and my FEV is exactly the same . . . and my FEV1 is 3 % predicted higher - which is actually within my "range."
My reaction: "You've got to be freakin' kidding me . . . .a whole year of blind study and now three times a day for the last three months with the real thing, and this is all I've got?" Granted, my PFTs are relatively normal, but still . . . I wanted some bang for my buck . . . The research team really didn't know how to respond . . .
So I saunter upstairs for my clinic appointment, my disappointment apparent . . .
And then my doctor comes in and shows me a chart of just my FEV1 in actual numbers, not percent predicted, for the last two years . . . it looked like this:
That big jump being today's FEV1 in actual numbers!!!! Two docs were confering as to why such a jump in actual numbers only calculated out to a 3% difference in predicted? They decided they were going to have to look into how predicted is calculated for this study . . . it's based on height, age, as well as "results" so they wondered if something in my combination was making the predicted "off." We may never know.
Needless to say, I was much happier seeing the actual numbers! Screw predicted . . .
So after about 30 minutes of saying denufosol was not worth my time, I changed my tune and will stay on it. It's obviously doing something good. If nothing else, it is containing any exacerbations . . . I've haven't been on oral antibiotics for about 9 months and I'm usually on Cipro 3-4 times a year for three weeks at a time.
It does irriate my throat -but my throat gets irritated if a piece of dust is in the air. The stuff I cough up is undeniably more slippery - so thinner. I still find it to be a pain for 15 minutes three times a day, and quite honestly, once I'm off study and am prescribed it for real, I'll likely do it twice a day more often than three times . . . I've even proposed that to be a study after it gets initial FDA approval. But the proof was in the numbers . . .so I'm a believer.
To be continued . . .
You can find the original post here.
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