What will VX-809 do for me?

[Alexander]

Hey Guys,

just having some thoughts about the VX-809 Drug for people, who have the Delta F508 mutation of CF.

As you may have read on my other post, My FEV1 is quite low, around 45%. So I was wondering, what will VX-809 do for me and for others?

Will it totally compensate the CF Gene defect? Does that mean i dont have to inhale anymore or worry about bacteria infections?

Tell me your thoughts about it and what you think or know. I'd appreciate it.

Greetings,
Alexander

 

[Alexander]

Hey Guys,

just having some thoughts about the VX-809 Drug for people, who have the Delta F508 mutation of CF.

As you may have read on my other post, My FEV1 is quite low, around 45%. So I was wondering, what will VX-809 do for me and for others?

Will it totally compensate the CF Gene defect? Does that mean i dont have to inhale anymore or worry about bacteria infections?

Tell me your thoughts about it and what you think or know. I'd appreciate it.

Greetings,
Alexander

 

[Alexander]

Hey Guys,

just having some thoughts about the VX-809 Drug for people, who have the Delta F508 mutation of CF.

As you may have read on my other post, My FEV1 is quite low, around 45%. So I was wondering, what will VX-809 do for me and for others?

Will it totally compensate the CF Gene defect? Does that mean i dont have to inhale anymore or worry about bacteria infections?

Tell me your thoughts about it and what you think or know. I'd appreciate it.

Greetings,
Alexander

 

[Alexander]

Hey Guys,

just having some thoughts about the VX-809 Drug for people, who have the Delta F508 mutation of CF.

As you may have read on my other post, My FEV1 is quite low, around 45%. So I was wondering, what will VX-809 do for me and for others?

Will it totally compensate the CF Gene defect? Does that mean i dont have to inhale anymore or worry about bacteria infections?

Tell me your thoughts about it and what you think or know. I'd appreciate it.

Greetings,
Alexander

 

[Alexander]

Hey Guys,
<br />
<br />just having some thoughts about the VX-809 Drug for people, who have the Delta F508 mutation of CF.
<br />
<br />As you may have read on my other post, My FEV1 is quite low, around 45%. So I was wondering, what will VX-809 do for me and for others?
<br />
<br />Will it totally compensate the CF Gene defect? Does that mean i dont have to inhale anymore or worry about bacteria infections?
<br />
<br />Tell me your thoughts about it and what you think or know. I'd appreciate it.
<br />
<br />Greetings,
<br />Alexander

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alexander</b></i>



Will it totally compensate the CF Gene defect? </end quote></div>


They're not sure which is why it's in clinical trials.



<div class="FTQUOTE"><begin quote>Does that mean i dont have to inhale anymore or worry about bacteria infections? </end quote></div>

Again, they're not sure. The medication is in clinical trials to see how it impacts CF patients. No one knows for sure what a medication will do until it's tested in a large patient population.

Since your FEV1 is around 45% you probably have significant lung damage. This drug will not repair permanent lung damage.

Whether or not PA or other bacteria will go away is yet to be understood. My guess is not, particularly in lungs that have sustained permanent lung damage.

But again, no one knows and those who claim to know are simply hypothesizing.

The best way to know is getting involved in clinical trials and encourage others to do so. The more people enroll and the quicker they enroll, the sooner we will understand the answers to your questions



Tell me your thoughts about it and what you think or know. I'd appreciate it.



Greetings,

Alexander</end quote></div>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alexander</b></i>



Will it totally compensate the CF Gene defect? </end quote></div>


They're not sure which is why it's in clinical trials.



<div class="FTQUOTE"><begin quote>Does that mean i dont have to inhale anymore or worry about bacteria infections? </end quote></div>

Again, they're not sure. The medication is in clinical trials to see how it impacts CF patients. No one knows for sure what a medication will do until it's tested in a large patient population.

Since your FEV1 is around 45% you probably have significant lung damage. This drug will not repair permanent lung damage.

Whether or not PA or other bacteria will go away is yet to be understood. My guess is not, particularly in lungs that have sustained permanent lung damage.

But again, no one knows and those who claim to know are simply hypothesizing.

The best way to know is getting involved in clinical trials and encourage others to do so. The more people enroll and the quicker they enroll, the sooner we will understand the answers to your questions



Tell me your thoughts about it and what you think or know. I'd appreciate it.



Greetings,

Alexander</end quote></div>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alexander</b></i>



Will it totally compensate the CF Gene defect? </end quote></div>


They're not sure which is why it's in clinical trials.



<div class="FTQUOTE"><begin quote>Does that mean i dont have to inhale anymore or worry about bacteria infections? </end quote></div>

Again, they're not sure. The medication is in clinical trials to see how it impacts CF patients. No one knows for sure what a medication will do until it's tested in a large patient population.

Since your FEV1 is around 45% you probably have significant lung damage. This drug will not repair permanent lung damage.

Whether or not PA or other bacteria will go away is yet to be understood. My guess is not, particularly in lungs that have sustained permanent lung damage.

But again, no one knows and those who claim to know are simply hypothesizing.

The best way to know is getting involved in clinical trials and encourage others to do so. The more people enroll and the quicker they enroll, the sooner we will understand the answers to your questions



Tell me your thoughts about it and what you think or know. I'd appreciate it.



Greetings,

Alexander</end quote></div>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alexander</b></i>



Will it totally compensate the CF Gene defect? </end quote>


They're not sure which is why it's in clinical trials.



<div class="FTQUOTE"><begin quote>Does that mean i dont have to inhale anymore or worry about bacteria infections? </end quote>

Again, they're not sure. The medication is in clinical trials to see how it impacts CF patients. No one knows for sure what a medication will do until it's tested in a large patient population.

Since your FEV1 is around 45% you probably have significant lung damage. This drug will not repair permanent lung damage.

Whether or not PA or other bacteria will go away is yet to be understood. My guess is not, particularly in lungs that have sustained permanent lung damage.

But again, no one knows and those who claim to know are simply hypothesizing.

The best way to know is getting involved in clinical trials and encourage others to do so. The more people enroll and the quicker they enroll, the sooner we will understand the answers to your questions



Tell me your thoughts about it and what you think or know. I'd appreciate it.



Greetings,

Alexander</end quote>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alexander</b></i>
<br />
<br />
<br />
<br />Will it totally compensate the CF Gene defect? </end quote>
<br />
<br />
<br />They're not sure which is why it's in clinical trials.
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>Does that mean i dont have to inhale anymore or worry about bacteria infections? </end quote>
<br />
<br />Again, they're not sure. The medication is in clinical trials to see how it impacts CF patients. No one knows for sure what a medication will do until it's tested in a large patient population.
<br />
<br />Since your FEV1 is around 45% you probably have significant lung damage. This drug will not repair permanent lung damage.
<br />
<br />Whether or not PA or other bacteria will go away is yet to be understood. My guess is not, particularly in lungs that have sustained permanent lung damage.
<br />
<br />But again, no one knows and those who claim to know are simply hypothesizing.
<br />
<br />The best way to know is getting involved in clinical trials and encourage others to do so. The more people enroll and the quicker they enroll, the sooner we will understand the answers to your questions
<br />
<br />
<br />
<br />Tell me your thoughts about it and what you think or know. I'd appreciate it.
<br />
<br />
<br />
<br />Greetings,
<br />
<br />Alexander</end quote>

 

[kmaried]

Hi Alexander,

I don't think anyone can completely answer your questions yet, as it is still going through trials to determine its efficacy.

I think the hope is the drug will help restore some of the chloride exchange (movement of salt water) between cells that is impaired due to CF. I don't think anyone expects it to totally compensate. However, if our cells are functioning more normally as a result perhaps we will have fewer infections, and even restore some lung function. It attempts to restore this function in all organs, though - not just lungs - so it will be interesting to see if there is any effect on the pancreas, etc.

Again, nothing has been proven quite yet.
Hope this helps!

Kris
27 w/cf

 

[kmaried]

Hi Alexander,

I don't think anyone can completely answer your questions yet, as it is still going through trials to determine its efficacy.

I think the hope is the drug will help restore some of the chloride exchange (movement of salt water) between cells that is impaired due to CF. I don't think anyone expects it to totally compensate. However, if our cells are functioning more normally as a result perhaps we will have fewer infections, and even restore some lung function. It attempts to restore this function in all organs, though - not just lungs - so it will be interesting to see if there is any effect on the pancreas, etc.

Again, nothing has been proven quite yet.
Hope this helps!

Kris
27 w/cf

 

[kmaried]

Hi Alexander,

I don't think anyone can completely answer your questions yet, as it is still going through trials to determine its efficacy.

I think the hope is the drug will help restore some of the chloride exchange (movement of salt water) between cells that is impaired due to CF. I don't think anyone expects it to totally compensate. However, if our cells are functioning more normally as a result perhaps we will have fewer infections, and even restore some lung function. It attempts to restore this function in all organs, though - not just lungs - so it will be interesting to see if there is any effect on the pancreas, etc.

Again, nothing has been proven quite yet.
Hope this helps!

Kris
27 w/cf

 

[kmaried]

Hi Alexander,

I don't think anyone can completely answer your questions yet, as it is still going through trials to determine its efficacy.

I think the hope is the drug will help restore some of the chloride exchange (movement of salt water) between cells that is impaired due to CF. I don't think anyone expects it to totally compensate. However, if our cells are functioning more normally as a result perhaps we will have fewer infections, and even restore some lung function. It attempts to restore this function in all organs, though - not just lungs - so it will be interesting to see if there is any effect on the pancreas, etc.

Again, nothing has been proven quite yet.
Hope this helps!

Kris
27 w/cf

 

[kmaried]

Hi Alexander,
<br />
<br />I don't think anyone can completely answer your questions yet, as it is still going through trials to determine its efficacy.
<br />
<br />I think the hope is the drug will help restore some of the chloride exchange (movement of salt water) between cells that is impaired due to CF. I don't think anyone expects it to totally compensate. However, if our cells are functioning more normally as a result perhaps we will have fewer infections, and even restore some lung function. It attempts to restore this function in all organs, though - not just lungs - so it will be interesting to see if there is any effect on the pancreas, etc.
<br />
<br />Again, nothing has been proven quite yet.
<br />Hope this helps!
<br />
<br />Kris
<br />27 w/cf

 

[Alexander]

Ok, this will be interesting. By the way, I dont have much lung damage. It is still a mystery to my docs why my FEV1 is so low. Cause my CT scans look quite good. Only thing is that I have some minor damages on the top of my lungs. Otherwise all is ok. But this isnt why i opened this post^^

Hmm, CF patienctes didnt participate yet, right? So no one can give us first hand experience.
VX-770 seems to work pretty well, so why not VX-809? <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I know, its something different. But hmm, I would really like to know more...

 

[Alexander]

Ok, this will be interesting. By the way, I dont have much lung damage. It is still a mystery to my docs why my FEV1 is so low. Cause my CT scans look quite good. Only thing is that I have some minor damages on the top of my lungs. Otherwise all is ok. But this isnt why i opened this post^^

Hmm, CF patienctes didnt participate yet, right? So no one can give us first hand experience.
VX-770 seems to work pretty well, so why not VX-809? <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I know, its something different. But hmm, I would really like to know more...

 

[Alexander]

Ok, this will be interesting. By the way, I dont have much lung damage. It is still a mystery to my docs why my FEV1 is so low. Cause my CT scans look quite good. Only thing is that I have some minor damages on the top of my lungs. Otherwise all is ok. But this isnt why i opened this post^^

Hmm, CF patienctes didnt participate yet, right? So no one can give us first hand experience.
VX-770 seems to work pretty well, so why not VX-809? <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I know, its something different. But hmm, I would really like to know more...

 

[Alexander]

Ok, this will be interesting. By the way, I dont have much lung damage. It is still a mystery to my docs why my FEV1 is so low. Cause my CT scans look quite good. Only thing is that I have some minor damages on the top of my lungs. Otherwise all is ok. But this isnt why i opened this post^^

Hmm, CF patienctes didnt participate yet, right? So no one can give us first hand experience.
VX-770 seems to work pretty well, so why not VX-809? <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I know, its something different. But hmm, I would really like to know more...

 

[Alexander]

Ok, this will be interesting. By the way, I dont have much lung damage. It is still a mystery to my docs why my FEV1 is so low. Cause my CT scans look quite good. Only thing is that I have some minor damages on the top of my lungs. Otherwise all is ok. But this isnt why i opened this post^^
<br />
<br />Hmm, CF patienctes didnt participate yet, right? So no one can give us first hand experience.
<br />VX-770 seems to work pretty well, so why not VX-809? <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />I know, its something different. But hmm, I would really like to know more...