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Am I the only one who was disappointed with the Vertex results?

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SarahProcter

Guest
I have read all sorts of positive posts and articles and other opinions with regard to the recent results published by Vertex re: the initial study of VX-809 with VX-770 in patients with double delta F508 mutations. Am I the only person who finds them really disappointing? For folks with G551D, vx770 looks <b>amazing</b>, with something like a 45 point drop in the sweat test value after just a couple weeks of therapy. For the combo for patients with DD508, the numbers aren't nearly that good.<div><br></div><div>But I keep reading that it's promising and hopeful and good. What am I missing? Am I the only one who finds it disappointing?</div>
 
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SarahProcter

Guest
I have read all sorts of positive posts and articles and other opinions with regard to the recent results published by Vertex re: the initial study of VX-809 with VX-770 in patients with double delta F508 mutations. Am I the only person who finds them really disappointing? For folks with G551D, vx770 looks <b>amazing</b>, with something like a 45 point drop in the sweat test value after just a couple weeks of therapy. For the combo for patients with DD508, the numbers aren't nearly that good.<br>But I keep reading that it's promising and hopeful and good. What am I missing? Am I the only one who finds it disappointing?
 
S

SarahProcter

Guest
I have read all sorts of positive posts and articles and other opinions with regard to the recent results published by Vertex re: the initial study of VX-809 with VX-770 in patients with double delta F508 mutations. Am I the only person who finds them really disappointing? For folks with G551D, vx770 looks <b>amazing</b>, with something like a 45 point drop in the sweat test value after just a couple weeks of therapy. For the combo for patients with DD508, the numbers aren't nearly that good.<br>But I keep reading that it's promising and hopeful and good. What am I missing? Am I the only one who finds it disappointing?
 
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LouLou

New member
Not sure where your reading all these posts and such but it's not on here :) There was only one discussion of it on here (that I know of) and it was very accurate and interesting. I especially like the link towards the bottom of the discussion.
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=608111&enterthread=y

Please add your two cents.
 
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LouLou

New member
Not sure where your reading all these posts and such but it's not on here :) There was only one discussion of it on here (that I know of) and it was very accurate and interesting. I especially like the link towards the bottom of the discussion.
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=608111&enterthread=y

Please add your two cents.
 
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LouLou

New member
Not sure where your reading all these posts and such but it's not on here :) There was only one discussion of it on here (that I know of) and it was very accurate and interesting. I especially like the link towards the bottom of the discussion.
<br />http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=608111&enterthread=y
<br />
<br />Please add your two cents.
 
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cindylou

Guest
I do think the time limits are worth looking at - this phase of the 809 trial was only for 2 weeks. The 770 phase that had such good results was much longer-term than that.
 
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cindylou

Guest
I do think the time limits are worth looking at - this phase of the 809 trial was only for 2 weeks. The 770 phase that had such good results was much longer-term than that.
 
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cindylou

Guest
I do think the time limits are worth looking at - this phase of the 809 trial was only for 2 weeks. The 770 phase that had such good results was much longer-term than that.
 
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petnurse

New member
Don't be discouraged. This is exactly the result that the cff and vertex expected. They told us this months ago. The combo was only for a few days to simply see if it worked. Doses need to be tweeked. It did work. Give it time, let it go through full trials before assuming it doesn't work. Also, there is another vertex drug behind it that they think is even better. If you want more info, call the cff and tell them you have questions about vertex. They have people there to take calls on it. They will talk to you right away
I understand the concern, my son is ddf508.
 
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petnurse

New member
Don't be discouraged. This is exactly the result that the cff and vertex expected. They told us this months ago. The combo was only for a few days to simply see if it worked. Doses need to be tweeked. It did work. Give it time, let it go through full trials before assuming it doesn't work. Also, there is another vertex drug behind it that they think is even better. If you want more info, call the cff and tell them you have questions about vertex. They have people there to take calls on it. They will talk to you right away
I understand the concern, my son is ddf508.
 
P

petnurse

New member
Don't be discouraged. This is exactly the result that the cff and vertex expected. They told us this months ago. The combo was only for a few days to simply see if it worked. Doses need to be tweeked. It did work. Give it time, let it go through full trials before assuming it doesn't work. Also, there is another vertex drug behind it that they think is even better. If you want more info, call the cff and tell them you have questions about vertex. They have people there to take calls on it. They will talk to you right away
<br /> I understand the concern, my son is ddf508.
 
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