BrysonsMommy
New member
My 3 year old has a copy of the G551D mutation.. I was just curious if anybody was involved in the clinical trials for the VX770. I am so excited for this to come out.....Anxiously hoping...
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
VX 770 and the G551D mutation
- Thread starter BrysonsMommy
- Start date
BrysonsMommy
New member
My 3 year old has a copy of the G551D mutation.. I was just curious if anybody was involved in the clinical trials for the VX770. I am so excited for this to come out.....Anxiously hoping...
BrysonsMommy
New member
My 3 year old has a copy of the G551D mutation.. I was just curious if anybody was involved in the clinical trials for the VX770. I am so excited for this to come out.....Anxiously hoping...
My daughter has the G551D mutation but is too young for the clinical trials. I have heard that the initial results are very promising and I know many adults who have been on the drug in the trial have reported feeling "normal" for the first time...........we are cautiously hopeful!
My daughter has the G551D mutation but is too young for the clinical trials. I have heard that the initial results are very promising and I know many adults who have been on the drug in the trial have reported feeling "normal" for the first time...........we are cautiously hopeful!
My daughter has the G551D mutation but is too young for the clinical trials. I have heard that the initial results are very promising and I know many adults who have been on the drug in the trial have reported feeling "normal" for the first time...........we are cautiously hopeful!
I was in Ph.2B and on drug. Now am in Ph. 3 (year long study) and am about to switch to open label extension where I will definitely be getting drug on Oct. 15. I believe at the National CF conference coming up in mid Oct they will announce the results of Ph. 3 through 24 weeks. The later 24 weeks are still in effect and will be finished in Feb. when the results of Ph. 3 will be shared. I can not speak about my specific experience with Ph. 3 as I am under a confidentiality agreement. They do this to keep the data clean as well as keep investors from making decisions before trial data is released. After all one person's experience isn't everyone's experience right? It's been a pleasure working with Vertex and I look forward to taking the drug through open label extension until it is FDA approved. I've heard estimates that this could be as soon as Feb. 2012 but we shall see.
Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
I was in Ph.2B and on drug. Now am in Ph. 3 (year long study) and am about to switch to open label extension where I will definitely be getting drug on Oct. 15. I believe at the National CF conference coming up in mid Oct they will announce the results of Ph. 3 through 24 weeks. The later 24 weeks are still in effect and will be finished in Feb. when the results of Ph. 3 will be shared. I can not speak about my specific experience with Ph. 3 as I am under a confidentiality agreement. They do this to keep the data clean as well as keep investors from making decisions before trial data is released. After all one person's experience isn't everyone's experience right? It's been a pleasure working with Vertex and I look forward to taking the drug through open label extension until it is FDA approved. I've heard estimates that this could be as soon as Feb. 2012 but we shall see.
Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
I was in Ph.2B and on drug. Now am in Ph. 3 (year long study) and am about to switch to open label extension where I will definitely be getting drug on Oct. 15. I believe at the National CF conference coming up in mid Oct they will announce the results of Ph. 3 through 24 weeks. The later 24 weeks are still in effect and will be finished in Feb. when the results of Ph. 3 will be shared. I can not speak about my specific experience with Ph. 3 as I am under a confidentiality agreement. They do this to keep the data clean as well as keep investors from making decisions before trial data is released. After all one person's experience isn't everyone's experience right? It's been a pleasure working with Vertex and I look forward to taking the drug through open label extension until it is FDA approved. I've heard estimates that this could be as soon as Feb. 2012 but we shall see.
<br />
<br />Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
<br />
<br />Everything good you've heard is true. It's totally worth the wait. Keep doing all that chest pt, exercising, keeping weight up etc. All that you have to do to keep yourself and your little one's well. This drug has the potential to stop the disease in it's tracks but it won't fix any damage that has been done. GET THAT MUCUS OUT!
B
brewz2
Guest
What an encouraging post, thank you for making my day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I'll share this with my kids later =)
Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
B
brewz2
Guest
What an encouraging post, thank you for making my day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I'll share this with my kids later =)
Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
B
brewz2
Guest
What an encouraging post, thank you for making my day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I'll share this with my kids later =)
<br />
<br />Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
<br />
<br />Tracey, mom to Sydney 9 w/cf & asthma and Seth, 5 w/cf - both DDF508
BrysonsMommy
New member
Thank you so much for your post!!! It is very exciting!!!
BrysonsMommy
New member
Thank you so much for your post!!! It is very exciting!!!
BrysonsMommy
New member
Thank you so much for your post!!! It is very exciting!!!
BrysonsMommy
New member
Thank you so much for you post... So exciting!!
BrysonsMommy
New member
Thank you so much for you post... So exciting!!
BrysonsMommy
New member
Thank you so much for you post... So exciting!!