Denufosol

Sevenstars · Jun 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: deeznuts

and i'm not so sure i'm comfortable with the idea that they tailor the study to get the results they want as fast as they want. shouldn't a study be designed to find out what the efficacy and effects actually are rather than expediting fda approval?

but, hey, new drugs, yay. that in itself is a good thing, but i'm not a fan of ends justifying means.</end quote></div>

Sadly, Brad doesn't realise the can of worms he has reopened. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=33934&catid=2317#comments">Blog</a>

Yes, a study is designed to find out the efficacy of what a drug was designed to do. Read Darb's post, it was designed to help people with little lung involvement and prevent them from getting worse. Just like they aren't helped with a Cepacia or PA treatment, we aren't all going to be helped with Denufosol. Different drugs for different stages/symptoms, it's just the way it works.

But, yes, they should have simply pasted the entirety of the study information in the email, it would have made sense.

Sevenstars · Jun 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: deeznuts

and i'm not so sure i'm comfortable with the idea that they tailor the study to get the results they want as fast as they want. shouldn't a study be designed to find out what the efficacy and effects actually are rather than expediting fda approval?

but, hey, new drugs, yay. that in itself is a good thing, but i'm not a fan of ends justifying means.</end quote></div>

Sadly, Brad doesn't realise the can of worms he has reopened. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=33934&catid=2317#comments">Blog</a>

Yes, a study is designed to find out the efficacy of what a drug was designed to do. Read Darb's post, it was designed to help people with little lung involvement and prevent them from getting worse. Just like they aren't helped with a Cepacia or PA treatment, we aren't all going to be helped with Denufosol. Different drugs for different stages/symptoms, it's just the way it works.

But, yes, they should have simply pasted the entirety of the study information in the email, it would have made sense.

Sevenstars · Jun 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: deeznuts

and i'm not so sure i'm comfortable with the idea that they tailor the study to get the results they want as fast as they want. shouldn't a study be designed to find out what the efficacy and effects actually are rather than expediting fda approval?

but, hey, new drugs, yay. that in itself is a good thing, but i'm not a fan of ends justifying means.</end quote></div>

Sadly, Brad doesn't realise the can of worms he has reopened. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=33934&catid=2317#comments">Blog</a>

Yes, a study is designed to find out the efficacy of what a drug was designed to do. Read Darb's post, it was designed to help people with little lung involvement and prevent them from getting worse. Just like they aren't helped with a Cepacia or PA treatment, we aren't all going to be helped with Denufosol. Different drugs for different stages/symptoms, it's just the way it works.

But, yes, they should have simply pasted the entirety of the study information in the email, it would have made sense.

Sevenstars · Jun 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: deeznuts

and i'm not so sure i'm comfortable with the idea that they tailor the study to get the results they want as fast as they want. shouldn't a study be designed to find out what the efficacy and effects actually are rather than expediting fda approval?

but, hey, new drugs, yay. that in itself is a good thing, but i'm not a fan of ends justifying means.</end quote>

Sadly, Brad doesn't realise the can of worms he has reopened. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=33934&catid=2317#comments">Blog</a>

Yes, a study is designed to find out the efficacy of what a drug was designed to do. Read Darb's post, it was designed to help people with little lung involvement and prevent them from getting worse. Just like they aren't helped with a Cepacia or PA treatment, we aren't all going to be helped with Denufosol. Different drugs for different stages/symptoms, it's just the way it works.

But, yes, they should have simply pasted the entirety of the study information in the email, it would have made sense.

Sevenstars · Jun 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: deeznuts
 
 and i'm not so sure i'm comfortable with the idea that they tailor the study to get the results they want as fast as they want. shouldn't a study be designed to find out what the efficacy and effects actually are rather than expediting fda approval?
 
 
 
 but, hey, new drugs, yay. that in itself is a good thing, but i'm not a fan of ends justifying means.</end quote>
 
 Sadly, Brad doesn't realise the can of worms he has reopened. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=33934&catid=2317#comments">Blog</a>
 
 Yes, a study is designed to find out the efficacy of what a drug was designed to do. Read Darb's post, it was designed to help people with little lung involvement and prevent them from getting worse. Just like they aren't helped with a Cepacia or PA treatment, we aren't all going to be helped with Denufosol. Different drugs for different stages/symptoms, it's just the way it works.
 
 But, yes, they should have simply pasted the entirety of the study information in the email, it would have made sense.

ladybug · Jun 8, 2008

i read on the cff website to click to go to a certain place for ongoing clinical trials... there are many many trials, some recruiting, others not. although, on NONE of those studies does it state any requirements for participation. i would be so appreciative if they would just include that in the description of the studies instead of making us click all around and read tons of stuff about it and THEN, finally either making us call to get more information (which really irks me if I'm not even qualified to have to go through all those steps) or stating required FEV1, etc. at the end of the descriptions, etc.

i also don't understand why they can't just put in their pleas for subjects the requirements of the subjects so we don't waste a ton of time reading studies that we can't take part in anyway.

sorry, its late and that post about not being able to be in the denufosol trial cause my FEV1 is way lower than 75% really irked me. it would help if they'd just be upfront about such things to save us some time. just IMO though. <img src="i/expressions/face-icon-small-wink.gif" border="0">

anyway.... hope everyone is doing well. have a great rest of your weekend!

ladybug · Jun 8, 2008

i read on the cff website to click to go to a certain place for ongoing clinical trials... there are many many trials, some recruiting, others not. although, on NONE of those studies does it state any requirements for participation. i would be so appreciative if they would just include that in the description of the studies instead of making us click all around and read tons of stuff about it and THEN, finally either making us call to get more information (which really irks me if I'm not even qualified to have to go through all those steps) or stating required FEV1, etc. at the end of the descriptions, etc.

i also don't understand why they can't just put in their pleas for subjects the requirements of the subjects so we don't waste a ton of time reading studies that we can't take part in anyway.

sorry, its late and that post about not being able to be in the denufosol trial cause my FEV1 is way lower than 75% really irked me. it would help if they'd just be upfront about such things to save us some time. just IMO though. <img src="i/expressions/face-icon-small-wink.gif" border="0">

anyway.... hope everyone is doing well. have a great rest of your weekend!

ladybug · Jun 8, 2008

i read on the cff website to click to go to a certain place for ongoing clinical trials... there are many many trials, some recruiting, others not. although, on NONE of those studies does it state any requirements for participation. i would be so appreciative if they would just include that in the description of the studies instead of making us click all around and read tons of stuff about it and THEN, finally either making us call to get more information (which really irks me if I'm not even qualified to have to go through all those steps) or stating required FEV1, etc. at the end of the descriptions, etc.

i also don't understand why they can't just put in their pleas for subjects the requirements of the subjects so we don't waste a ton of time reading studies that we can't take part in anyway.

sorry, its late and that post about not being able to be in the denufosol trial cause my FEV1 is way lower than 75% really irked me. it would help if they'd just be upfront about such things to save us some time. just IMO though. <img src="i/expressions/face-icon-small-wink.gif" border="0">

anyway.... hope everyone is doing well. have a great rest of your weekend!

ladybug · Jun 8, 2008

i read on the cff website to click to go to a certain place for ongoing clinical trials... there are many many trials, some recruiting, others not. although, on NONE of those studies does it state any requirements for participation. i would be so appreciative if they would just include that in the description of the studies instead of making us click all around and read tons of stuff about it and THEN, finally either making us call to get more information (which really irks me if I'm not even qualified to have to go through all those steps) or stating required FEV1, etc. at the end of the descriptions, etc.

i also don't understand why they can't just put in their pleas for subjects the requirements of the subjects so we don't waste a ton of time reading studies that we can't take part in anyway.

sorry, its late and that post about not being able to be in the denufosol trial cause my FEV1 is way lower than 75% really irked me. it would help if they'd just be upfront about such things to save us some time. just IMO though. <img src="i/expressions/face-icon-small-wink.gif" border="0">

anyway.... hope everyone is doing well. have a great rest of your weekend!

ladybug · Jun 8, 2008

i read on the cff website to click to go to a certain place for ongoing clinical trials... there are many many trials, some recruiting, others not. although, on NONE of those studies does it state any requirements for participation. i would be so appreciative if they would just include that in the description of the studies instead of making us click all around and read tons of stuff about it and THEN, finally either making us call to get more information (which really irks me if I'm not even qualified to have to go through all those steps) or stating required FEV1, etc. at the end of the descriptions, etc.
 
 i also don't understand why they can't just put in their pleas for subjects the requirements of the subjects so we don't waste a ton of time reading studies that we can't take part in anyway.
 
 sorry, its late and that post about not being able to be in the denufosol trial cause my FEV1 is way lower than 75% really irked me. it would help if they'd just be upfront about such things to save us some time. just IMO though. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 anyway.... hope everyone is doing well. have a great rest of your weekend!

Faust · Jun 8, 2008

While any new drug that actually helps us is of course great news...Something tells me this will be just another addition to our already endless battery of nebs that we have to do and takes up a large part of our life, that will inevitably just treat some of our symptoms. I am already on a 2 and 1/2 hour system for my morning nebs/vest, and then another 2 and 1/2 hour system for my night time nebs/vest. So as it is now, i'm doing 5 hours of treatments daily just to survive. Denufosol
Better do all it is described to do and then some. Last I heard, denufosol is just going to another artillery round for us to use against our CF, with a past paradigm still greatly in tact.

So let's say I have to do a treatment of denufosol every morning and night for an additional 30 mins. So now out of nowhere I am adding an additional hour for my care daily due to this new treatment. While I of course want new treatments...Should I really feel impressed with me getting another hour added to my awake time before bed?

Faust · Jun 8, 2008

While any new drug that actually helps us is of course great news...Something tells me this will be just another addition to our already endless battery of nebs that we have to do and takes up a large part of our life, that will inevitably just treat some of our symptoms. I am already on a 2 and 1/2 hour system for my morning nebs/vest, and then another 2 and 1/2 hour system for my night time nebs/vest. So as it is now, i'm doing 5 hours of treatments daily just to survive. Denufosol
Better do all it is described to do and then some. Last I heard, denufosol is just going to another artillery round for us to use against our CF, with a past paradigm still greatly in tact.

So let's say I have to do a treatment of denufosol every morning and night for an additional 30 mins. So now out of nowhere I am adding an additional hour for my care daily due to this new treatment. While I of course want new treatments...Should I really feel impressed with me getting another hour added to my awake time before bed?

Faust · Jun 8, 2008

While any new drug that actually helps us is of course great news...Something tells me this will be just another addition to our already endless battery of nebs that we have to do and takes up a large part of our life, that will inevitably just treat some of our symptoms. I am already on a 2 and 1/2 hour system for my morning nebs/vest, and then another 2 and 1/2 hour system for my night time nebs/vest. So as it is now, i'm doing 5 hours of treatments daily just to survive. Denufosol
Better do all it is described to do and then some. Last I heard, denufosol is just going to another artillery round for us to use against our CF, with a past paradigm still greatly in tact.

So let's say I have to do a treatment of denufosol every morning and night for an additional 30 mins. So now out of nowhere I am adding an additional hour for my care daily due to this new treatment. While I of course want new treatments...Should I really feel impressed with me getting another hour added to my awake time before bed?

Faust · Jun 8, 2008

While any new drug that actually helps us is of course great news...Something tells me this will be just another addition to our already endless battery of nebs that we have to do and takes up a large part of our life, that will inevitably just treat some of our symptoms. I am already on a 2 and 1/2 hour system for my morning nebs/vest, and then another 2 and 1/2 hour system for my night time nebs/vest. So as it is now, i'm doing 5 hours of treatments daily just to survive. Denufosol
Better do all it is described to do and then some. Last I heard, denufosol is just going to another artillery round for us to use against our CF, with a past paradigm still greatly in tact.

So let's say I have to do a treatment of denufosol every morning and night for an additional 30 mins. So now out of nowhere I am adding an additional hour for my care daily due to this new treatment. While I of course want new treatments...Should I really feel impressed with me getting another hour added to my awake time before bed?

Faust · Jun 8, 2008

While any new drug that actually helps us is of course great news...Something tells me this will be just another addition to our already endless battery of nebs that we have to do and takes up a large part of our life, that will inevitably just treat some of our symptoms. I am already on a 2 and 1/2 hour system for my morning nebs/vest, and then another 2 and 1/2 hour system for my night time nebs/vest. So as it is now, i'm doing 5 hours of treatments daily just to survive. Denufosol
 Better do all it is described to do and then some. Last I heard, denufosol is just going to another artillery round for us to use against our CF, with a past paradigm still greatly in tact.
 
 
 So let's say I have to do a treatment of denufosol every morning and night for an additional 30 mins. So now out of nowhere I am adding an additional hour for my care daily due to this new treatment. While I of course want new treatments...Should I really feel impressed with me getting another hour added to my awake time before bed?

Lex · Jun 8, 2008

"...showed significant improvement in lung function. Denufosol aims to treat the basic defect..."

I have to admit it...I was suckered....umm...I mean, excited when I got this email a couple days ago. They do a great job getting us hyped up, which is so wrong IMO. They leave out the two most important facts:

FEV at least 75%. And even if this last phase of this trial is successful, it will take another TWO years in the development stage of making sure it doesn't cause cancer before it's available to market.

I understand that the pharma industry is big business. I'm not so naive as to think that it's truly noble. But to lead us to think that this great relief is around the corner for all of us is BS. I have a hard time believing that with stem cell research technology, we are still trying to develop yet another neb treatment. Enough already.

Chris Rock was right. We don't cure anything. There's no money in a cure. When's the last time they cured something? POLIO? I asked a CEO of a large pharma co. recently if he believed the above statement. Of course he disagreed. Then he drove his Bentley back to his $20 Million home. I'm not kidding.

Lex · Jun 8, 2008

"...showed significant improvement in lung function. Denufosol aims to treat the basic defect..."

I have to admit it...I was suckered....umm...I mean, excited when I got this email a couple days ago. They do a great job getting us hyped up, which is so wrong IMO. They leave out the two most important facts:

FEV at least 75%. And even if this last phase of this trial is successful, it will take another TWO years in the development stage of making sure it doesn't cause cancer before it's available to market.

I understand that the pharma industry is big business. I'm not so naive as to think that it's truly noble. But to lead us to think that this great relief is around the corner for all of us is BS. I have a hard time believing that with stem cell research technology, we are still trying to develop yet another neb treatment. Enough already.

Chris Rock was right. We don't cure anything. There's no money in a cure. When's the last time they cured something? POLIO? I asked a CEO of a large pharma co. recently if he believed the above statement. Of course he disagreed. Then he drove his Bentley back to his $20 Million home. I'm not kidding.

Lex · Jun 8, 2008

"...showed significant improvement in lung function. Denufosol aims to treat the basic defect..."

I have to admit it...I was suckered....umm...I mean, excited when I got this email a couple days ago. They do a great job getting us hyped up, which is so wrong IMO. They leave out the two most important facts:

FEV at least 75%. And even if this last phase of this trial is successful, it will take another TWO years in the development stage of making sure it doesn't cause cancer before it's available to market.

I understand that the pharma industry is big business. I'm not so naive as to think that it's truly noble. But to lead us to think that this great relief is around the corner for all of us is BS. I have a hard time believing that with stem cell research technology, we are still trying to develop yet another neb treatment. Enough already.

Chris Rock was right. We don't cure anything. There's no money in a cure. When's the last time they cured something? POLIO? I asked a CEO of a large pharma co. recently if he believed the above statement. Of course he disagreed. Then he drove his Bentley back to his $20 Million home. I'm not kidding.

Lex · Jun 8, 2008

"...showed significant improvement in lung function. Denufosol aims to treat the basic defect..."

I have to admit it...I was suckered....umm...I mean, excited when I got this email a couple days ago. They do a great job getting us hyped up, which is so wrong IMO. They leave out the two most important facts:

FEV at least 75%. And even if this last phase of this trial is successful, it will take another TWO years in the development stage of making sure it doesn't cause cancer before it's available to market.

I understand that the pharma industry is big business. I'm not so naive as to think that it's truly noble. But to lead us to think that this great relief is around the corner for all of us is BS. I have a hard time believing that with stem cell research technology, we are still trying to develop yet another neb treatment. Enough already.

Chris Rock was right. We don't cure anything. There's no money in a cure. When's the last time they cured something? POLIO? I asked a CEO of a large pharma co. recently if he believed the above statement. Of course he disagreed. Then he drove his Bentley back to his $20 Million home. I'm not kidding.

Lex · Jun 8, 2008

"...showed significant improvement in lung function. Denufosol aims to treat the basic defect..."
 
 I have to admit it...I was suckered....umm...I mean, excited when I got this email a couple days ago. They do a great job getting us hyped up, which is so wrong IMO. They leave out the two most important facts:
 
 FEV at least 75%. And even if this last phase of this trial is successful, it will take another TWO years in the development stage of making sure it doesn't cause cancer before it's available to market.
 
 I understand that the pharma industry is big business. I'm not so naive as to think that it's truly noble. But to lead us to think that this great relief is around the corner for all of us is BS. I have a hard time believing that with stem cell research technology, we are still trying to develop yet another neb treatment. Enough already.
 
 Chris Rock was right. We don't cure anything. There's no money in a cure. When's the last time they cured something? POLIO? I asked a CEO of a large pharma co. recently if he believed the above statement. Of course he disagreed. Then he drove his Bentley back to his $20 Million home. I'm not kidding.

Denufosol

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