Bad news from Vertex

M

markbrave

New member
Does the "sadly" mean that you see positive effects and you are sad that it is going to stop ? So vx-809 is not completely ruled out ?
I have read blogs, where it is speculated that it is an issue of lipoabsorption where VX-770 and VX-809 compete... (both of them are lipophilic). This issue may be more or less relevant depending on the person. VX-661 should not have this problem because it is idrophilic.

But it is all speculation... Let's wait for the results. In the meanwhile, I happy for the G551D people...
 
M

markbrave

New member
Does the "sadly" mean that you see positive effects and you are sad that it is going to stop ? So vx-809 is not completely ruled out ?
I have read blogs, where it is speculated that it is an issue of lipoabsorption where VX-770 and VX-809 compete... (both of them are lipophilic). This issue may be more or less relevant depending on the person. VX-661 should not have this problem because it is idrophilic.

But it is all speculation... Let's wait for the results. In the meanwhile, I happy for the G551D people...
 
J

JENNYC

New member
Harriett..I couldn't help but notice that you don't know Emily's 2nd mutation. May I ask if you had the full panel test done and they still could not find it? The reason I ask is because we are going in tomorrow to get Abby the full panel test done because when she was diagnosed they only did the 51 panel. If they couldn't find her other mutation out with all this info flying around I might go crazy. Lol Just curious, very anxious to see what her second mutation is. Thanks
 
J

JENNYC

New member
Harriett..I couldn't help but notice that you don't know Emily's 2nd mutation. May I ask if you had the full panel test done and they still could not find it? The reason I ask is because we are going in tomorrow to get Abby the full panel test done because when she was diagnosed they only did the 51 panel. If they couldn't find her other mutation out with all this info flying around I might go crazy. Lol Just curious, very anxious to see what her second mutation is. Thanks
 
K

Keepercjr

Guest
Hi Anne!

Awesome news about the study you are participating in. Thank you for sharing. I have been taking kalydeco (off lable script from my doctor) for almost a week but have a cold turning into bronchitis (on top of some residual pneumonia) so I have no idea if it is helping me or not. Time will tell <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Keepercjr

Guest
Hi Anne!

Awesome news about the study you are participating in. Thank you for sharing. I have been taking kalydeco (off lable script from my doctor) for almost a week but have a cold turning into bronchitis (on top of some residual pneumonia) so I have no idea if it is helping me or not. Time will tell <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rainsmom

Guest
"<span style="text-decoration: underline;"><strong>phase 2a. Due to be approved by the FDA in 2016.</strong> " what website did you obtain this information?<strong></strong>
 
R

rainsmom

Guest
"<span style="text-decoration: underline;"><strong>phase 2a. Due to be approved by the FDA in 2016.</strong> " what website did you obtain this information?<strong></strong>
 
H

hmw

New member
JennyC - yes, she had sequencing done and nothing! She has a cousin with CF that has the same unknown mutation, so our family is of interest to our center. Emily is going to be getting the MAP testing sponsored by the CFF and Hopkins to try again to find that mutation. Odds are very good you will find your daughter's mutation though! Wishing the best!

Rains mom- I'd like to know that too!
 
H

hmw

New member
JennyC - yes, she had sequencing done and nothing! She has a cousin with CF that has the same unknown mutation, so our family is of interest to our center. Emily is going to be getting the MAP testing sponsored by the CFF and Hopkins to try again to find that mutation. Odds are very good you will find your daughter's mutation though! Wishing the best!

Rains mom- I'd like to know that too!
 
P

petersymons

Guest
Hi Anne, can you tell us of any of the benefits you have noticed since being in the study/Regards Peter
 
P

petersymons

Guest
Hi Anne, can you tell us of any of the benefits you have noticed since being in the study/Regards Peter
 
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