Cayston and it's effect on participants in clinical trials

[LouLou]

Cayston is really going to level the playing field for those on placebo vs. those on drug in my opinion. I think the drugs in the pipeline are really going to have to be rockstars to shine like they did in the pre-Cayston days.

Take me for example, I won't disclose any details of what's going on in this trial for me but I'm in Ph. 3 of V770. I'm 6 months in with 6 months to go until I switch to open label extension (and definitely get drug).

Well I'm about to drop Colistin and add Cayston to the mix. After all Cayston is FDA approved and Colistin isn't so it makes total sense my doc would want me on it. Clincal trial participation does not stop your doctor from changing your regimen as needed. Will my data be different this next 6 months? Will improvements or lack there of be chalked up to Cayston or 770?

At least with 770 there is a difference in sweat chloride results but what about drugs where weight gain and pulmonary (FEV1) improvement is the means for evaluation??

I'd be interested in hearing your opinion. Those of you that have participated in an Azli trial...what sort of quantifiable results did you get that perhaps will skew current participants trial results?

Newbies come on and join the conversation!!

 

[LouLou]

Cayston is really going to level the playing field for those on placebo vs. those on drug in my opinion. I think the drugs in the pipeline are really going to have to be rockstars to shine like they did in the pre-Cayston days.

Take me for example, I won't disclose any details of what's going on in this trial for me but I'm in Ph. 3 of V770. I'm 6 months in with 6 months to go until I switch to open label extension (and definitely get drug).

Well I'm about to drop Colistin and add Cayston to the mix. After all Cayston is FDA approved and Colistin isn't so it makes total sense my doc would want me on it. Clincal trial participation does not stop your doctor from changing your regimen as needed. Will my data be different this next 6 months? Will improvements or lack there of be chalked up to Cayston or 770?

At least with 770 there is a difference in sweat chloride results but what about drugs where weight gain and pulmonary (FEV1) improvement is the means for evaluation??

I'd be interested in hearing your opinion. Those of you that have participated in an Azli trial...what sort of quantifiable results did you get that perhaps will skew current participants trial results?

Newbies come on and join the conversation!!

 

[LouLou]

Cayston is really going to level the playing field for those on placebo vs. those on drug in my opinion. I think the drugs in the pipeline are really going to have to be rockstars to shine like they did in the pre-Cayston days.

Take me for example, I won't disclose any details of what's going on in this trial for me but I'm in Ph. 3 of V770. I'm 6 months in with 6 months to go until I switch to open label extension (and definitely get drug).

Well I'm about to drop Colistin and add Cayston to the mix. After all Cayston is FDA approved and Colistin isn't so it makes total sense my doc would want me on it. Clincal trial participation does not stop your doctor from changing your regimen as needed. Will my data be different this next 6 months? Will improvements or lack there of be chalked up to Cayston or 770?

At least with 770 there is a difference in sweat chloride results but what about drugs where weight gain and pulmonary (FEV1) improvement is the means for evaluation??

I'd be interested in hearing your opinion. Those of you that have participated in an Azli trial...what sort of quantifiable results did you get that perhaps will skew current participants trial results?

Newbies come on and join the conversation!!

 

[LouLou]

Cayston is really going to level the playing field for those on placebo vs. those on drug in my opinion. I think the drugs in the pipeline are really going to have to be rockstars to shine like they did in the pre-Cayston days.

Take me for example, I won't disclose any details of what's going on in this trial for me but I'm in Ph. 3 of V770. I'm 6 months in with 6 months to go until I switch to open label extension (and definitely get drug).

Well I'm about to drop Colistin and add Cayston to the mix. After all Cayston is FDA approved and Colistin isn't so it makes total sense my doc would want me on it. Clincal trial participation does not stop your doctor from changing your regimen as needed. Will my data be different this next 6 months? Will improvements or lack there of be chalked up to Cayston or 770?

At least with 770 there is a difference in sweat chloride results but what about drugs where weight gain and pulmonary (FEV1) improvement is the means for evaluation??

I'd be interested in hearing your opinion. Those of you that have participated in an Azli trial...what sort of quantifiable results did you get that perhaps will skew current participants trial results?

Newbies come on and join the conversation!!

 

[LouLou]

Cayston is really going to level the playing field for those on placebo vs. those on drug in my opinion. I think the drugs in the pipeline are really going to have to be rockstars to shine like they did in the pre-Cayston days.
<br />
<br />Take me for example, I won't disclose any details of what's going on in this trial for me but I'm in Ph. 3 of V770. I'm 6 months in with 6 months to go until I switch to open label extension (and definitely get drug).
<br />
<br />Well I'm about to drop Colistin and add Cayston to the mix. After all Cayston is FDA approved and Colistin isn't so it makes total sense my doc would want me on it. Clincal trial participation does not stop your doctor from changing your regimen as needed. Will my data be different this next 6 months? Will improvements or lack there of be chalked up to Cayston or 770?
<br />
<br />At least with 770 there is a difference in sweat chloride results but what about drugs where weight gain and pulmonary (FEV1) improvement is the means for evaluation??
<br />
<br />I'd be interested in hearing your opinion. Those of you that have participated in an Azli trial...what sort of quantifiable results did you get that perhaps will skew current participants trial results?
<br />
<br />Newbies come on and join the conversation!!

 

[mom2lillian]

I was wondering about this myself and if they would discourage people from starting Cayston or account for it in some way. Unfortunately I dont know anyone in the clinical trials portion of our business, I would love to pick someone's brain.

 

[mom2lillian]

I was wondering about this myself and if they would discourage people from starting Cayston or account for it in some way. Unfortunately I dont know anyone in the clinical trials portion of our business, I would love to pick someone's brain.

 

[mom2lillian]

I was wondering about this myself and if they would discourage people from starting Cayston or account for it in some way. Unfortunately I dont know anyone in the clinical trials portion of our business, I would love to pick someone's brain.

 

[mom2lillian]

I was wondering about this myself and if they would discourage people from starting Cayston or account for it in some way. Unfortunately I dont know anyone in the clinical trials portion of our business, I would love to pick someone's brain.

 

[mom2lillian]

I was wondering about this myself and if they would discourage people from starting Cayston or account for it in some way. Unfortunately I dont know anyone in the clinical trials portion of our business, I would love to pick someone's brain.

 

[Skye]

I was not IN the AZLI study; but, have taken advantage of the EAP for the last couple of years. So I can share with you my experience on Cayston. For me it has been more of a "maintenance" gift. It really didn't give me a dramatic FEV1 improvement. It just allowed me to maintain better. My tune-up time really didn't change all that much though....still doing a tune-up about 1x/year.

What I DO LOVE about it though is that it is easy to inhale with no ill side effects like what I get with Tobi or Collistin. No SOB, voice changes, wheezing. I find it very easy to tolerate and I love the cycle-time when I am on it. I wish I could fill the off time with something that works a little better for me. Right now Collistin is the choice and I am not a big fan of it.

 

[Skye]

I was not IN the AZLI study; but, have taken advantage of the EAP for the last couple of years. So I can share with you my experience on Cayston. For me it has been more of a "maintenance" gift. It really didn't give me a dramatic FEV1 improvement. It just allowed me to maintain better. My tune-up time really didn't change all that much though....still doing a tune-up about 1x/year.

What I DO LOVE about it though is that it is easy to inhale with no ill side effects like what I get with Tobi or Collistin. No SOB, voice changes, wheezing. I find it very easy to tolerate and I love the cycle-time when I am on it. I wish I could fill the off time with something that works a little better for me. Right now Collistin is the choice and I am not a big fan of it.

 

[Skye]

I was not IN the AZLI study; but, have taken advantage of the EAP for the last couple of years. So I can share with you my experience on Cayston. For me it has been more of a "maintenance" gift. It really didn't give me a dramatic FEV1 improvement. It just allowed me to maintain better. My tune-up time really didn't change all that much though....still doing a tune-up about 1x/year.

What I DO LOVE about it though is that it is easy to inhale with no ill side effects like what I get with Tobi or Collistin. No SOB, voice changes, wheezing. I find it very easy to tolerate and I love the cycle-time when I am on it. I wish I could fill the off time with something that works a little better for me. Right now Collistin is the choice and I am not a big fan of it.

 

[Skye]

I was not IN the AZLI study; but, have taken advantage of the EAP for the last couple of years. So I can share with you my experience on Cayston. For me it has been more of a "maintenance" gift. It really didn't give me a dramatic FEV1 improvement. It just allowed me to maintain better. My tune-up time really didn't change all that much though....still doing a tune-up about 1x/year.

What I DO LOVE about it though is that it is easy to inhale with no ill side effects like what I get with Tobi or Collistin. No SOB, voice changes, wheezing. I find it very easy to tolerate and I love the cycle-time when I am on it. I wish I could fill the off time with something that works a little better for me. Right now Collistin is the choice and I am not a big fan of it.

 

[Skye]

I was not IN the AZLI study; but, have taken advantage of the EAP for the last couple of years. So I can share with you my experience on Cayston. For me it has been more of a "maintenance" gift. It really didn't give me a dramatic FEV1 improvement. It just allowed me to maintain better. My tune-up time really didn't change all that much though....still doing a tune-up about 1x/year.
<br />
<br />What I DO LOVE about it though is that it is easy to inhale with no ill side effects like what I get with Tobi or Collistin. No SOB, voice changes, wheezing. I find it very easy to tolerate and I love the cycle-time when I am on it. I wish I could fill the off time with something that works a little better for me. Right now Collistin is the choice and I am not a big fan of it.

 

[hmw]

I understand the absolute NEED to adjust someone's cf therapy for the good of their health and wellbeing as needed.

What I wonder about is maintaining the integrity of the clinical trial process... introducing relatively untested variables midway through cause changes that would be impossible to accurately interpret. It would be a shame if the success of one good drug 'masked' the benefits of another good med if large numbers of trial participants started it and skewed the numbers.

I don't know what the answer should be since no one should settle for sub-optimal treatment of their cf. But we need the trial process to be as accurate as possible too.

 

[hmw]

I understand the absolute NEED to adjust someone's cf therapy for the good of their health and wellbeing as needed.

What I wonder about is maintaining the integrity of the clinical trial process... introducing relatively untested variables midway through cause changes that would be impossible to accurately interpret. It would be a shame if the success of one good drug 'masked' the benefits of another good med if large numbers of trial participants started it and skewed the numbers.

I don't know what the answer should be since no one should settle for sub-optimal treatment of their cf. But we need the trial process to be as accurate as possible too.

 

[hmw]

I understand the absolute NEED to adjust someone's cf therapy for the good of their health and wellbeing as needed.

What I wonder about is maintaining the integrity of the clinical trial process... introducing relatively untested variables midway through cause changes that would be impossible to accurately interpret. It would be a shame if the success of one good drug 'masked' the benefits of another good med if large numbers of trial participants started it and skewed the numbers.

I don't know what the answer should be since no one should settle for sub-optimal treatment of their cf. But we need the trial process to be as accurate as possible too.

 

[hmw]

I understand the absolute NEED to adjust someone's cf therapy for the good of their health and wellbeing as needed.

What I wonder about is maintaining the integrity of the clinical trial process... introducing relatively untested variables midway through cause changes that would be impossible to accurately interpret. It would be a shame if the success of one good drug 'masked' the benefits of another good med if large numbers of trial participants started it and skewed the numbers.

I don't know what the answer should be since no one should settle for sub-optimal treatment of their cf. But we need the trial process to be as accurate as possible too.

 

[hmw]

I understand the absolute NEED to adjust someone's cf therapy for the good of their health and wellbeing as needed.
<br />
<br />What I wonder about is maintaining the integrity of the clinical trial process... introducing relatively untested variables midway through cause changes that would be impossible to accurately interpret. It would be a shame if the success of one good drug 'masked' the benefits of another good med if large numbers of trial participants started it and skewed the numbers.
<br />
<br />I don't know what the answer should be since no one should settle for sub-optimal treatment of their cf. But we need the trial process to be as accurate as possible too.