Bad news from Vertex

M

musclemania70

New member
After speaking with TWO representatives from Vertex IN PERSON, they both confirmed that the 770/809 trials will be scrapped alltogether if the 661 is more beneficial. They have findings that 661 will most likely take over and replace the 770/809 combo.
You may have already figured this out. But I wanted to hear it from Vertex myself. And I talked to them in person.
Kind of a let down for most of us because that means they are starting all over from square one with the 661 for the Delta 508s.
Other mutations may indeed be affected by the Kalydeco but the results may not be as long lasting or as powerful as it would be with the g551d (you probably already realized this).
Anyhow, thanks people for participating in the trials and helping to get these drugs studied. If it weren't for you, there would be little hope.
Hopefully, you have time on your side and you are far from 'needing' these drugs tosaving your lung health.
 
M

musclemania70

New member
After speaking with TWO representatives from Vertex IN PERSON, they both confirmed that the 770/809 trials will be scrapped alltogether if the 661 is more beneficial. They have findings that 661 will most likely take over and replace the 770/809 combo.
You may have already figured this out. But I wanted to hear it from Vertex myself. And I talked to them in person.
Kind of a let down for most of us because that means they are starting all over from square one with the 661 for the Delta 508s.
Other mutations may indeed be affected by the Kalydeco but the results may not be as long lasting or as powerful as it would be with the g551d (you probably already realized this).
Anyhow, thanks people for participating in the trials and helping to get these drugs studied. If it weren't for you, there would be little hope.
Hopefully, you have time on your side and you are far from 'needing' these drugs tosaving your lung health.
 
C

cfsucks

Guest
isn't this good news? they found that 661 is far more effective, even without using a combination? below is an excerpt from a blog post for someone in the 661 study. apparently they are only taking the one med by itself and seems to be extremely effective (at least for this patient)- with an 11% increase in lung function over 2 weeks as well as a 5 pound weight gain.

"Hi Stacey! It is a 20% chance that you get the placebo because one out of every 5 subjects receive the placebo. Therefore, 20%. Also, I was little confused about giving the vx661 alone if its efficacy is dependent on the vx770 . However, how it was explained to me and I can send you the info if you like, is that the double delta508 is a formation mutation. Therefore, the protein is folded improperly and cannot travel to the surface as it is suppose to. Our sodium ion channels may work fine but the protein just can't get to them. The are trying the vx661 alone to see if once unfolded these proteins can travel as they are meant to. Because there are so many variations to each mutation some people with the double delta508 may have sodium ion channels that dont work properly. Therefore, after this vx661 is given alone depending on the results, they will trial it with the vx770 to see if it helps improve it at all. It is a lot to understand but it does make sense. I originally was told the two needed to be given together but then the research coordinator explained it in greater detail to me. Hope this helps!! ~ Katie|"

http://www.cfgirlseyeofthetiger.com/blog/2012/03/20/Halfway-through-.aspx
 
C

cfsucks

Guest
isn't this good news? they found that 661 is far more effective, even without using a combination? below is an excerpt from a blog post for someone in the 661 study. apparently they are only taking the one med by itself and seems to be extremely effective (at least for this patient)- with an 11% increase in lung function over 2 weeks as well as a 5 pound weight gain.

"Hi Stacey! It is a 20% chance that you get the placebo because one out of every 5 subjects receive the placebo. Therefore, 20%. Also, I was little confused about giving the vx661 alone if its efficacy is dependent on the vx770 . However, how it was explained to me and I can send you the info if you like, is that the double delta508 is a formation mutation. Therefore, the protein is folded improperly and cannot travel to the surface as it is suppose to. Our sodium ion channels may work fine but the protein just can't get to them. The are trying the vx661 alone to see if once unfolded these proteins can travel as they are meant to. Because there are so many variations to each mutation some people with the double delta508 may have sodium ion channels that dont work properly. Therefore, after this vx661 is given alone depending on the results, they will trial it with the vx770 to see if it helps improve it at all. It is a lot to understand but it does make sense. I originally was told the two needed to be given together but then the research coordinator explained it in greater detail to me. Hope this helps!! ~ Katie|"

http://www.cfgirlseyeofthetiger.com/blog/2012/03/20/Halfway-through-.aspx
 
S

saveferris2009

New member
Oh I thought this was already a forgone conclusion.

Why invest millions in a clinical trial that is producing inferior results vs. another clinical trial?
 
S

saveferris2009

New member
Oh I thought this was already a forgone conclusion.

Why invest millions in a clinical trial that is producing inferior results vs. another clinical trial?
 
A

Anomie

New member
I think the 661 is being tested in conjunction with 770 right now. I always thought that DF508 had trouble forming the sodium ion channel as well. Personally, i think they should modify the 809 trials to include all 3 drugs since I heard that may be the key to correcting DF508.
 
A

Anomie

New member
I think the 661 is being tested in conjunction with 770 right now. I always thought that DF508 had trouble forming the sodium ion channel as well. Personally, i think they should modify the 809 trials to include all 3 drugs since I heard that may be the key to correcting DF508.
 
C

cfsucks

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> I think the 661 is being tested in conjunction with 770 right now. I always thought that DF508 had trouble forming the sodium ion channel as well. Personally, i think they should modify the 809 trials to include all 3 drugs since I heard that may be the key to correcting DF508.</end quote>

thats what i originally thought until i read the post i linked to. it seems that they are trying 661 alone and it's proving effective
 
C

cfsucks

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> I think the 661 is being tested in conjunction with 770 right now. I always thought that DF508 had trouble forming the sodium ion channel as well. Personally, i think they should modify the 809 trials to include all 3 drugs since I heard that may be the key to correcting DF508.</end quote>

thats what i originally thought until i read the post i linked to. it seems that they are trying 661 alone and it's proving effective
 
A

Anomie

New member
What about this federal website that says they're being tested together. Can anyone clarify?

http://clinicaltrials.gov/ct2/show/NCT01531673
 
A

Anomie

New member
What about this federal website that says they're being tested together. Can anyone clarify?

http://clinicaltrials.gov/ct2/show/NCT01531673
 
A

Anomie

New member
Actually if you read down on the link I posted you will see that they are testing it both with and without 770 in different arms of the study. Sounds like the drug is doing really well and should have no problem getting to the next stage of trials!
 
A

Anomie

New member
Actually if you read down on the link I posted you will see that they are testing it both with and without 770 in different arms of the study. Sounds like the drug is doing really well and should have no problem getting to the next stage of trials!
 
B

Bobo

New member
Hi eveyone,

these are exciting news <img src="i/expressions/face-icon-small-smile.gif" border="0">!!!

Do you know at what stage of trial the 661 drug is actually?
 
B

Bobo

New member
Hi eveyone,

these are exciting news <img src="i/expressions/face-icon-small-smile.gif" border="0">!!!

Do you know at what stage of trial the 661 drug is actually?
 
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