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DF508ers who participated in VX-770 trials
- Thread starter jmiller
- Start date
C
cfsucks
Guest
when is completition expected?
C
cfsucks
Guest
when is completition expected?
I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.
I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kyrock85</b></i> I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.</end quote>
Interesting, to me what this means is that there is more to DDF508 and DF508 than we (the people) are being told. It must also have a gating component, or is it that Kalydeco does much more then just fix gating mutations?.... Too many variables.
Interesting, to me what this means is that there is more to DDF508 and DF508 than we (the people) are being told. It must also have a gating component, or is it that Kalydeco does much more then just fix gating mutations?.... Too many variables.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kyrock85</b></i> I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.</end quote>
Interesting, to me what this means is that there is more to DDF508 and DF508 than we (the people) are being told. It must also have a gating component, or is it that Kalydeco does much more then just fix gating mutations?.... Too many variables.
Interesting, to me what this means is that there is more to DDF508 and DF508 than we (the people) are being told. It must also have a gating component, or is it that Kalydeco does much more then just fix gating mutations?.... Too many variables.
C
cfsucks
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kyrock85</b></i> I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.</end quote>
so you were on the kalydeco medication? were you able to continue it since study completition even though you don't have g551d?
so you were on the kalydeco medication? were you able to continue it since study completition even though you don't have g551d?
C
cfsucks
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kyrock85</b></i> I participated in the study (i'm homozygous df508). In the begining I wasn't suppose to be able to see what my PFTs were (they were pretty good about keepin that info hidden). I was on the drug from January 2010 until june 2011 when they pulled it for not showing enough significant data. I can tell you that when I had to try 2 times to get into the study. Like I said, for about 6 months I wasn't allowed to know what my PFTS were, but I can tell you that you that it was a whole heck of a lot easier to breath, I had decrease cough, my mucous was thinner, and I put on weight like it was job! After beign on the study for 6 months, I was switched to part B. To continue and switch to part b you had to meet one of 3 outcomes. Increase PFT by i believe 10%, change in sweat chlorides, and I forget the 3rd. I had a change in my sweat chloride. Once switched to part B, I could see my PFTS once again. My PFTs remainded stable ( and much improved from when I began the study). I went from getting clean outs from every 6 months to once a year and now it will have been 21 months on friday. SOOO, does this drug work on ddf508, somewhat. Does it need some kind of help yes.</end quote>
so you were on the kalydeco medication? were you able to continue it since study completition even though you don't have g551d?
so you were on the kalydeco medication? were you able to continue it since study completition even though you don't have g551d?
P
petersymons
Guest
Hi kyrock just wondering what your baseline FEv was before you started on the Kalydeco?
P
petersymons
Guest
Hi kyrock just wondering what your baseline FEv was before you started on the Kalydeco?