one of my friends sent me the little tid-bit from a mom whose child has been in the trial (and obviously) on the drug for a month....looks real promising!!!!!
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Hi All,
I just wanted to let you know how Carly is doing on the Denufosol study.
She started back on October and at that time her pft's were all in the mid 70's. Specifically, her lower airways were at 75%. After four weeks on the "drug" (we don't know if she's getting the study or placebo), her pft's went into the mid 80's. Then they went to the 90's.
Last Thursday at clinic/study appointment her numbers were as follows:
FVC: 95% (up from 93%)
FEV1: 98% (up from 91%)
FEV1/FVC: 102% (up from 99%)
FEF 25-75%: 105% (up from 91%)
This is with very little CPT. I'm on her constantly but she blows it off or "forgets" and it's time for school, or too late at night.Always something. So I totally expected her numbers to be low again. She sounded junky to me and the doc noticed some sounds, yet she blew these numbers. She hasn't done this good since she was a young child, maybe 6 or so. I'm just shocked and happy and can say she's on the drug based on these numbers consistently going up.
She's also gained 2.2 lbs and grew 1/2" since November (and consistently since starting the study).
She switches over to the drug no matter what at the halfway point (it's a 50 week study) but it's clear she'll get the drug for the full 50 weeks, and possible after it ends and while waiting for FDA approval.
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Hi All,
I just wanted to let you know how Carly is doing on the Denufosol study.
She started back on October and at that time her pft's were all in the mid 70's. Specifically, her lower airways were at 75%. After four weeks on the "drug" (we don't know if she's getting the study or placebo), her pft's went into the mid 80's. Then they went to the 90's.
Last Thursday at clinic/study appointment her numbers were as follows:
FVC: 95% (up from 93%)
FEV1: 98% (up from 91%)
FEV1/FVC: 102% (up from 99%)
FEF 25-75%: 105% (up from 91%)
This is with very little CPT. I'm on her constantly but she blows it off or "forgets" and it's time for school, or too late at night.Always something. So I totally expected her numbers to be low again. She sounded junky to me and the doc noticed some sounds, yet she blew these numbers. She hasn't done this good since she was a young child, maybe 6 or so. I'm just shocked and happy and can say she's on the drug based on these numbers consistently going up.
She's also gained 2.2 lbs and grew 1/2" since November (and consistently since starting the study).
She switches over to the drug no matter what at the halfway point (it's a 50 week study) but it's clear she'll get the drug for the full 50 weeks, and possible after it ends and while waiting for FDA approval.
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