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Jeana
05-01-2009, 10:11 PM
I have the opportunity to either be in the Denufasol or VX potentiator study and am having a hard time deciding which to do. Anybody been on either of these? What are your thoughts? Thanks for any help. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana
05-01-2009, 10:11 PM
I have the opportunity to either be in the Denufasol or VX potentiator study and am having a hard time deciding which to do. Anybody been on either of these? What are your thoughts? Thanks for any help. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana
05-01-2009, 10:11 PM
I have the opportunity to either be in the Denufasol or VX potentiator study and am having a hard time deciding which to do. Anybody been on either of these? What are your thoughts? Thanks for any help. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana
05-01-2009, 10:11 PM
I have the opportunity to either be in the Denufasol or VX potentiator study and am having a hard time deciding which to do. Anybody been on either of these? What are your thoughts? Thanks for any help. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana
05-01-2009, 10:11 PM
I have the opportunity to either be in the Denufasol or VX potentiator study and am having a hard time deciding which to do. Anybody been on either of these? What are your thoughts? Thanks for any help. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
05-02-2009, 02:55 AM
I would recommend Denufosol.

They need many more people than the VX protentiator and Denufosol is much closer to being FDA approved.

There will be plenty of people who will enroll for the VX protentiator because of all the press... Denufosol is amazing and has had incredible Phase III results... but because it's in Phase III so many more patients are needed and it's a bit harder to recruit because you have to have an FEV1 > 75%.

But bottomline - involvement in any clinical trial is FANTASTIC. You help yourself and ALL Cfer's by volunteering your time. So thank you, thank you, THANK YOU!

saveferris2009
05-02-2009, 02:55 AM
I would recommend Denufosol.

They need many more people than the VX protentiator and Denufosol is much closer to being FDA approved.

There will be plenty of people who will enroll for the VX protentiator because of all the press... Denufosol is amazing and has had incredible Phase III results... but because it's in Phase III so many more patients are needed and it's a bit harder to recruit because you have to have an FEV1 > 75%.

But bottomline - involvement in any clinical trial is FANTASTIC. You help yourself and ALL Cfer's by volunteering your time. So thank you, thank you, THANK YOU!

saveferris2009
05-02-2009, 02:55 AM
I would recommend Denufosol.

They need many more people than the VX protentiator and Denufosol is much closer to being FDA approved.

There will be plenty of people who will enroll for the VX protentiator because of all the press... Denufosol is amazing and has had incredible Phase III results... but because it's in Phase III so many more patients are needed and it's a bit harder to recruit because you have to have an FEV1 > 75%.

But bottomline - involvement in any clinical trial is FANTASTIC. You help yourself and ALL Cfer's by volunteering your time. So thank you, thank you, THANK YOU!

saveferris2009
05-02-2009, 02:55 AM
I would recommend Denufosol.

They need many more people than the VX protentiator and Denufosol is much closer to being FDA approved.

There will be plenty of people who will enroll for the VX protentiator because of all the press... Denufosol is amazing and has had incredible Phase III results... but because it's in Phase III so many more patients are needed and it's a bit harder to recruit because you have to have an FEV1 > 75%.

But bottomline - involvement in any clinical trial is FANTASTIC. You help yourself and ALL Cfer's by volunteering your time. So thank you, thank you, THANK YOU!

saveferris2009
05-02-2009, 02:55 AM
I would recommend Denufosol.
<br />
<br />They need many more people than the VX protentiator and Denufosol is much closer to being FDA approved.
<br />
<br />There will be plenty of people who will enroll for the VX protentiator because of all the press... Denufosol is amazing and has had incredible Phase III results... but because it's in Phase III so many more patients are needed and it's a bit harder to recruit because you have to have an FEV1 > 75%.
<br />
<br />But bottomline - involvement in any clinical trial is FANTASTIC. You help yourself and ALL Cfer's by volunteering your time. So thank you, thank you, THANK YOU!

saveferris2009
05-02-2009, 03:02 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medpagetoday.com/Pulmonary/CysticFibrosis/9736
">http://www.medpagetoday.com/Pu...y/CysticFibrosis/9736
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/articles/126926.php
">http://www.medicalnewstoday.com/articles/126926.php
</a>
"[In TIGER-1] These patients who received denufosol for 48 weeks during TIGER-1 experienced a mean change from baseline in FEV1 of 115 ml, almost a two-and-a-half fold increase compared to the initial 48 ml increase at the end of the 24-week placebo-controlled portion of the trial...."

saveferris2009
05-02-2009, 03:02 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medpagetoday.com/Pulmonary/CysticFibrosis/9736
">http://www.medpagetoday.com/Pu...y/CysticFibrosis/9736
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/articles/126926.php
">http://www.medicalnewstoday.com/articles/126926.php
</a>
"[In TIGER-1] These patients who received denufosol for 48 weeks during TIGER-1 experienced a mean change from baseline in FEV1 of 115 ml, almost a two-and-a-half fold increase compared to the initial 48 ml increase at the end of the 24-week placebo-controlled portion of the trial...."

saveferris2009
05-02-2009, 03:02 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medpagetoday.com/Pulmonary/CysticFibrosis/9736
">http://www.medpagetoday.com/Pu...y/CysticFibrosis/9736
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/articles/126926.php
">http://www.medicalnewstoday.com/articles/126926.php
</a>
"[In TIGER-1] These patients who received denufosol for 48 weeks during TIGER-1 experienced a mean change from baseline in FEV1 of 115 ml, almost a two-and-a-half fold increase compared to the initial 48 ml increase at the end of the 24-week placebo-controlled portion of the trial...."

saveferris2009
05-02-2009, 03:02 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medpagetoday.com/Pulmonary/CysticFibrosis/9736
">http://www.medpagetoday.com/Pu...y/CysticFibrosis/9736
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/articles/126926.php
">http://www.medicalnewstoday.com/articles/126926.php
</a>
"[In TIGER-1] These patients who received denufosol for 48 weeks during TIGER-1 experienced a mean change from baseline in FEV1 of 115 ml, almost a two-and-a-half fold increase compared to the initial 48 ml increase at the end of the 24-week placebo-controlled portion of the trial...."

saveferris2009
05-02-2009, 03:02 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.medpagetoday.com/Pulmonary/CysticFibrosis/9736
">http://www.medpagetoday.com/Pu...y/CysticFibrosis/9736
</a><br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/articles/126926.php
">http://www.medicalnewstoday.com/articles/126926.php
</a><br />
<br />"[In TIGER-1] These patients who received denufosol for 48 weeks during TIGER-1 experienced a mean change from baseline in FEV1 of 115 ml, almost a two-and-a-half fold increase compared to the initial 48 ml increase at the end of the 24-week placebo-controlled portion of the trial...."

Jeana
05-02-2009, 03:25 AM
I have never really paid attention to ml for FEV1 improvement, but rather percent. Do you know what this means as far as a percentage?

Jeana
05-02-2009, 03:25 AM
I have never really paid attention to ml for FEV1 improvement, but rather percent. Do you know what this means as far as a percentage?

Jeana
05-02-2009, 03:25 AM
I have never really paid attention to ml for FEV1 improvement, but rather percent. Do you know what this means as far as a percentage?

Jeana
05-02-2009, 03:25 AM
I have never really paid attention to ml for FEV1 improvement, but rather percent. Do you know what this means as far as a percentage?

Jeana
05-02-2009, 03:25 AM
I have never really paid attention to ml for FEV1 improvement, but rather percent. Do you know what this means as far as a percentage?

Jeana
05-02-2009, 04:09 AM
Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...

Jeana
05-02-2009, 04:09 AM
Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...

Jeana
05-02-2009, 04:09 AM
Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...

Jeana
05-02-2009, 04:09 AM
Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...

Jeana
05-02-2009, 04:09 AM
Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...

dasjsmum
05-02-2009, 06:07 AM
Is that the phase three trial for vertex potentiator? I'm interested in finding out more about that if they're recruiting...are they recruiting for it now? I've been looking on the website to see if the phase three has started.

Thanks

dasjsmum
05-02-2009, 06:07 AM
Is that the phase three trial for vertex potentiator? I'm interested in finding out more about that if they're recruiting...are they recruiting for it now? I've been looking on the website to see if the phase three has started.

Thanks

dasjsmum
05-02-2009, 06:07 AM
Is that the phase three trial for vertex potentiator? I'm interested in finding out more about that if they're recruiting...are they recruiting for it now? I've been looking on the website to see if the phase three has started.

Thanks

dasjsmum
05-02-2009, 06:07 AM
Is that the phase three trial for vertex potentiator? I'm interested in finding out more about that if they're recruiting...are they recruiting for it now? I've been looking on the website to see if the phase three has started.

Thanks

dasjsmum
05-02-2009, 06:07 AM
Is that the phase three trial for vertex potentiator? I'm interested in finding out more about that if they're recruiting...are they recruiting for it now? I've been looking on the website to see if the phase three has started.
<br />
<br />Thanks

semperfiohana
05-02-2009, 09:24 AM
vx is only in phase 2, here's a link for that trial.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a>

semperfiohana
05-02-2009, 09:24 AM
vx is only in phase 2, here's a link for that trial.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a>

semperfiohana
05-02-2009, 09:24 AM
vx is only in phase 2, here's a link for that trial.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a>

semperfiohana
05-02-2009, 09:24 AM
vx is only in phase 2, here's a link for that trial.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a>

semperfiohana
05-02-2009, 09:24 AM
vx is only in phase 2, here's a link for that trial.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a>

saveferris2009
05-02-2009, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i>

vx is only in phase 2, here's a link for that trial.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a></end quote></div>



There are actuallly two VX meds: VX809 (entering Phase II) and VX770 (entering Phase III). So I'm not sure which you will be doing Jeanna.

Lots more info on my blog

saveferris2009
05-02-2009, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i>

vx is only in phase 2, here's a link for that trial.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a></end quote></div>



There are actuallly two VX meds: VX809 (entering Phase II) and VX770 (entering Phase III). So I'm not sure which you will be doing Jeanna.

Lots more info on my blog

saveferris2009
05-02-2009, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i>

vx is only in phase 2, here's a link for that trial.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a></end quote></div>



There are actuallly two VX meds: VX809 (entering Phase II) and VX770 (entering Phase III). So I'm not sure which you will be doing Jeanna.

Lots more info on my blog

saveferris2009
05-02-2009, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i>

vx is only in phase 2, here's a link for that trial.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a></end quote>



There are actuallly two VX meds: VX809 (entering Phase II) and VX770 (entering Phase III). So I'm not sure which you will be doing Jeanna.

Lots more info on my blog

saveferris2009
05-02-2009, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i>
<br />
<br />vx is only in phase 2, here's a link for that trial.
<br />
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct2/show/NCT00865904?term=vx-809&rank=1&show_locs=Y#locn">http://www.clinicaltrials.gov/...ank=1&show_locs=Y#locn</a></end quote>
<br />
<br />
<br />
<br />There are actuallly two VX meds: VX809 (entering Phase II) and VX770 (entering Phase III). So I'm not sure which you will be doing Jeanna.
<br />
<br />Lots more info on my blog

saveferris2009
05-02-2009, 10:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>

Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...</end quote></div>


First: it depends on what you're expected FEV1 is as to how you calculate the %, which is why this study doesn't quote improvement in %. Some very tall men have high expected FEV1's, where are shorter women have smaller expected FEV1. To make it apples to apples, you quote in absolute millileter improvement, not %.

You are right about having to stop HTS... it's a concern. The other concern is that you don't know all the side effects of any VX drug - whereas you do know side effects of Denufosol from Tiger I (300+ patients).

So there are benefits and drawbacks of both.

Again I think what's really important is that you're getting involved. You have a choice between 2 great meds which is very exciting and by enrolling you're helping the entire CF population. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
05-02-2009, 10:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>

Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...</end quote></div>


First: it depends on what you're expected FEV1 is as to how you calculate the %, which is why this study doesn't quote improvement in %. Some very tall men have high expected FEV1's, where are shorter women have smaller expected FEV1. To make it apples to apples, you quote in absolute millileter improvement, not %.

You are right about having to stop HTS... it's a concern. The other concern is that you don't know all the side effects of any VX drug - whereas you do know side effects of Denufosol from Tiger I (300+ patients).

So there are benefits and drawbacks of both.

Again I think what's really important is that you're getting involved. You have a choice between 2 great meds which is very exciting and by enrolling you're helping the entire CF population. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
05-02-2009, 10:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>

Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...</end quote></div>


First: it depends on what you're expected FEV1 is as to how you calculate the %, which is why this study doesn't quote improvement in %. Some very tall men have high expected FEV1's, where are shorter women have smaller expected FEV1. To make it apples to apples, you quote in absolute millileter improvement, not %.

You are right about having to stop HTS... it's a concern. The other concern is that you don't know all the side effects of any VX drug - whereas you do know side effects of Denufosol from Tiger I (300+ patients).

So there are benefits and drawbacks of both.

Again I think what's really important is that you're getting involved. You have a choice between 2 great meds which is very exciting and by enrolling you're helping the entire CF population. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
05-02-2009, 10:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>

Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...</end quote>


First: it depends on what you're expected FEV1 is as to how you calculate the %, which is why this study doesn't quote improvement in %. Some very tall men have high expected FEV1's, where are shorter women have smaller expected FEV1. To make it apples to apples, you quote in absolute millileter improvement, not %.

You are right about having to stop HTS... it's a concern. The other concern is that you don't know all the side effects of any VX drug - whereas you do know side effects of Denufosol from Tiger I (300+ patients).

So there are benefits and drawbacks of both.

Again I think what's really important is that you're getting involved. You have a choice between 2 great meds which is very exciting and by enrolling you're helping the entire CF population. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
05-02-2009, 10:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>
<br />
<br />Okay, it appears to me by looking at other studies that 20 mL is about 1%. So, it appears that those on Denufosol had an FEV1 increase of about 6% after 48 weeks. The only thing that worries me is that if I get the placebo, since you aren't allowed to be on hypertonic that my lung function may decrease in the first year without hypertonic or Denufosol. The second year I would get to be on Denufosol for sure though...</end quote>
<br />
<br />
<br />First: it depends on what you're expected FEV1 is as to how you calculate the %, which is why this study doesn't quote improvement in %. Some very tall men have high expected FEV1's, where are shorter women have smaller expected FEV1. To make it apples to apples, you quote in absolute millileter improvement, not %.
<br />
<br />You are right about having to stop HTS... it's a concern. The other concern is that you don't know all the side effects of any VX drug - whereas you do know side effects of Denufosol from Tiger I (300+ patients).
<br />
<br />So there are benefits and drawbacks of both.
<br />
<br />Again I think what's really important is that you're getting involved. You have a choice between 2 great meds which is very exciting and by enrolling you're helping the entire CF population. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana
05-02-2009, 02:44 PM
My clinic has been offered the opportunity to do the VX-770 but not the VX-809. I'm leaning towards the Denufosol study, with the my biggest hesitation being that I don't want to lose any of my FEV1 that I worked so hard to gain since pregnancy, since I won't be able to do hypertonic. Although I have not been as compliant with the hypertonic any. It's the one I haven't always been making time for.

On a different note, I just received a thing for jury duty. If they call me while I am on a drug study and would have to miss my required appointment to do jury duty could I get a doctor's note to excuse me? I would be willing to serve jury duty, but not at the expense of being kicked off of a drug study.

Jeana
05-02-2009, 02:44 PM
My clinic has been offered the opportunity to do the VX-770 but not the VX-809. I'm leaning towards the Denufosol study, with the my biggest hesitation being that I don't want to lose any of my FEV1 that I worked so hard to gain since pregnancy, since I won't be able to do hypertonic. Although I have not been as compliant with the hypertonic any. It's the one I haven't always been making time for.

On a different note, I just received a thing for jury duty. If they call me while I am on a drug study and would have to miss my required appointment to do jury duty could I get a doctor's note to excuse me? I would be willing to serve jury duty, but not at the expense of being kicked off of a drug study.

Jeana
05-02-2009, 02:44 PM
My clinic has been offered the opportunity to do the VX-770 but not the VX-809. I'm leaning towards the Denufosol study, with the my biggest hesitation being that I don't want to lose any of my FEV1 that I worked so hard to gain since pregnancy, since I won't be able to do hypertonic. Although I have not been as compliant with the hypertonic any. It's the one I haven't always been making time for.

On a different note, I just received a thing for jury duty. If they call me while I am on a drug study and would have to miss my required appointment to do jury duty could I get a doctor's note to excuse me? I would be willing to serve jury duty, but not at the expense of being kicked off of a drug study.

Jeana
05-02-2009, 02:44 PM
My clinic has been offered the opportunity to do the VX-770 but not the VX-809. I'm leaning towards the Denufosol study, with the my biggest hesitation being that I don't want to lose any of my FEV1 that I worked so hard to gain since pregnancy, since I won't be able to do hypertonic. Although I have not been as compliant with the hypertonic any. It's the one I haven't always been making time for.

On a different note, I just received a thing for jury duty. If they call me while I am on a drug study and would have to miss my required appointment to do jury duty could I get a doctor's note to excuse me? I would be willing to serve jury duty, but not at the expense of being kicked off of a drug study.

Jeana
05-02-2009, 02:44 PM
My clinic has been offered the opportunity to do the VX-770 but not the VX-809. I'm leaning towards the Denufosol study, with the my biggest hesitation being that I don't want to lose any of my FEV1 that I worked so hard to gain since pregnancy, since I won't be able to do hypertonic. Although I have not been as compliant with the hypertonic any. It's the one I haven't always been making time for.
<br />
<br />On a different note, I just received a thing for jury duty. If they call me while I am on a drug study and would have to miss my required appointment to do jury duty could I get a doctor's note to excuse me? I would be willing to serve jury duty, but not at the expense of being kicked off of a drug study.

Jeana
05-02-2009, 02:49 PM
Saveferris,
I know that saying 20 mL is about 1% isn't going to be completely accurate. I was looking at a women's study (on smokers) to kind of help me know the comparison. So, I guess it's a little more accurate than looking at a men's study.

I would think that the company could easily quote average percent increase based on the actual participants in the study, since they know their pre, during and post FEV1s. Most drug studies seem to quote the percent.

Jeana
05-02-2009, 02:49 PM
Saveferris,
I know that saying 20 mL is about 1% isn't going to be completely accurate. I was looking at a women's study (on smokers) to kind of help me know the comparison. So, I guess it's a little more accurate than looking at a men's study.

I would think that the company could easily quote average percent increase based on the actual participants in the study, since they know their pre, during and post FEV1s. Most drug studies seem to quote the percent.

Jeana
05-02-2009, 02:49 PM
Saveferris,
I know that saying 20 mL is about 1% isn't going to be completely accurate. I was looking at a women's study (on smokers) to kind of help me know the comparison. So, I guess it's a little more accurate than looking at a men's study.

I would think that the company could easily quote average percent increase based on the actual participants in the study, since they know their pre, during and post FEV1s. Most drug studies seem to quote the percent.

Jeana
05-02-2009, 02:49 PM
Saveferris,
I know that saying 20 mL is about 1% isn't going to be completely accurate. I was looking at a women's study (on smokers) to kind of help me know the comparison. So, I guess it's a little more accurate than looking at a men's study.

I would think that the company could easily quote average percent increase based on the actual participants in the study, since they know their pre, during and post FEV1s. Most drug studies seem to quote the percent.

Jeana
05-02-2009, 02:49 PM
Saveferris,
<br />I know that saying 20 mL is about 1% isn't going to be completely accurate. I was looking at a women's study (on smokers) to kind of help me know the comparison. So, I guess it's a little more accurate than looking at a men's study.
<br />
<br />I would think that the company could easily quote average percent increase based on the actual participants in the study, since they know their pre, during and post FEV1s. Most drug studies seem to quote the percent.

SEANP
05-02-2009, 02:49 PM
I would do the Denufosol. My son did it about a year ago. The only draw back is that it is 3x a day (at least it was when he did it) and like was mentioned above, it is much closer to approval. The VX trial does sound promising though and I think in the end if it pans out, more beneficial, but much less is known about side effects at this point.

SEANP
05-02-2009, 02:49 PM
I would do the Denufosol. My son did it about a year ago. The only draw back is that it is 3x a day (at least it was when he did it) and like was mentioned above, it is much closer to approval. The VX trial does sound promising though and I think in the end if it pans out, more beneficial, but much less is known about side effects at this point.

SEANP
05-02-2009, 02:49 PM
I would do the Denufosol. My son did it about a year ago. The only draw back is that it is 3x a day (at least it was when he did it) and like was mentioned above, it is much closer to approval. The VX trial does sound promising though and I think in the end if it pans out, more beneficial, but much less is known about side effects at this point.

SEANP
05-02-2009, 02:49 PM
I would do the Denufosol. My son did it about a year ago. The only draw back is that it is 3x a day (at least it was when he did it) and like was mentioned above, it is much closer to approval. The VX trial does sound promising though and I think in the end if it pans out, more beneficial, but much less is known about side effects at this point.

SEANP
05-02-2009, 02:49 PM
I would do the Denufosol. My son did it about a year ago. The only draw back is that it is 3x a day (at least it was when he did it) and like was mentioned above, it is much closer to approval. The VX trial does sound promising though and I think in the end if it pans out, more beneficial, but much less is known about side effects at this point.

LouLou
05-02-2009, 06:37 PM
I participated in Ph. 2B of 770 and plan to participate in Ph. 3. I think it's a personal decision. I had a wonderful experience on the study drug. I saw all the benefits you've read about and more such as coughing up plugs 6-12 at a time exactly 1 and 1/2 hrs after taking the drug every single time in the AM for the first week and a half. They were old plugs that I may otherwise not have gotten out. Anyway I'm not going to go on and on about my personal experience bc I'm just one of many. But to say the least I had not a single negative effect from the drug. I was on 150mg (we learned after the trial). I did not experience the slowed gut they described as a common side effect. I take it you have G551D if you are considering this trial or 2 copies of DF508. That is a requirement. Ph. 3 has not begun enrolling yet but hospitals are putting everything in place to begin soon. Good luck with your decision and if you have any questions for me just PM me.

LouLou
05-02-2009, 06:37 PM
I participated in Ph. 2B of 770 and plan to participate in Ph. 3. I think it's a personal decision. I had a wonderful experience on the study drug. I saw all the benefits you've read about and more such as coughing up plugs 6-12 at a time exactly 1 and 1/2 hrs after taking the drug every single time in the AM for the first week and a half. They were old plugs that I may otherwise not have gotten out. Anyway I'm not going to go on and on about my personal experience bc I'm just one of many. But to say the least I had not a single negative effect from the drug. I was on 150mg (we learned after the trial). I did not experience the slowed gut they described as a common side effect. I take it you have G551D if you are considering this trial or 2 copies of DF508. That is a requirement. Ph. 3 has not begun enrolling yet but hospitals are putting everything in place to begin soon. Good luck with your decision and if you have any questions for me just PM me.

LouLou
05-02-2009, 06:37 PM
I participated in Ph. 2B of 770 and plan to participate in Ph. 3. I think it's a personal decision. I had a wonderful experience on the study drug. I saw all the benefits you've read about and more such as coughing up plugs 6-12 at a time exactly 1 and 1/2 hrs after taking the drug every single time in the AM for the first week and a half. They were old plugs that I may otherwise not have gotten out. Anyway I'm not going to go on and on about my personal experience bc I'm just one of many. But to say the least I had not a single negative effect from the drug. I was on 150mg (we learned after the trial). I did not experience the slowed gut they described as a common side effect. I take it you have G551D if you are considering this trial or 2 copies of DF508. That is a requirement. Ph. 3 has not begun enrolling yet but hospitals are putting everything in place to begin soon. Good luck with your decision and if you have any questions for me just PM me.

LouLou
05-02-2009, 06:37 PM
I participated in Ph. 2B of 770 and plan to participate in Ph. 3. I think it's a personal decision. I had a wonderful experience on the study drug. I saw all the benefits you've read about and more such as coughing up plugs 6-12 at a time exactly 1 and 1/2 hrs after taking the drug every single time in the AM for the first week and a half. They were old plugs that I may otherwise not have gotten out. Anyway I'm not going to go on and on about my personal experience bc I'm just one of many. But to say the least I had not a single negative effect from the drug. I was on 150mg (we learned after the trial). I did not experience the slowed gut they described as a common side effect. I take it you have G551D if you are considering this trial or 2 copies of DF508. That is a requirement. Ph. 3 has not begun enrolling yet but hospitals are putting everything in place to begin soon. Good luck with your decision and if you have any questions for me just PM me.

LouLou
05-02-2009, 06:37 PM
I participated in Ph. 2B of 770 and plan to participate in Ph. 3. I think it's a personal decision. I had a wonderful experience on the study drug. I saw all the benefits you've read about and more such as coughing up plugs 6-12 at a time exactly 1 and 1/2 hrs after taking the drug every single time in the AM for the first week and a half. They were old plugs that I may otherwise not have gotten out. Anyway I'm not going to go on and on about my personal experience bc I'm just one of many. But to say the least I had not a single negative effect from the drug. I was on 150mg (we learned after the trial). I did not experience the slowed gut they described as a common side effect. I take it you have G551D if you are considering this trial or 2 copies of DF508. That is a requirement. Ph. 3 has not begun enrolling yet but hospitals are putting everything in place to begin soon. Good luck with your decision and if you have any questions for me just PM me.