Denufosol: Anyone currently taking?

S

SEANP

New member
Hi,
Just got back from my sons quarterly checkup. My wife and I have been tossing around the idea of enrolling my son (7 yrs old) in the Denufosol Research Study. The treatment time is fairly long (1year) and it requires 3 treatments a day on top of the pulmozyme he is currently on (and the vest). We can stop the hypertonic saline though. I have read that others on this site are involved. What have your experiences been so far. Any side effects?
Sean
 
S

SEANP

New member
Hi,
Just got back from my sons quarterly checkup. My wife and I have been tossing around the idea of enrolling my son (7 yrs old) in the Denufosol Research Study. The treatment time is fairly long (1year) and it requires 3 treatments a day on top of the pulmozyme he is currently on (and the vest). We can stop the hypertonic saline though. I have read that others on this site are involved. What have your experiences been so far. Any side effects?
Sean
 
S

SEANP

New member
Hi,
Just got back from my sons quarterly checkup. My wife and I have been tossing around the idea of enrolling my son (7 yrs old) in the Denufosol Research Study. The treatment time is fairly long (1year) and it requires 3 treatments a day on top of the pulmozyme he is currently on (and the vest). We can stop the hypertonic saline though. I have read that others on this site are involved. What have your experiences been so far. Any side effects?
Sean
 
N

NoExcuses

New member
If you decide to get involved, thank you in advance. You are doing an amazing service to the CF community. It is because of people like you that new drugs are brought to the market.

So from the bottom of my heart, thank you, thank you, thank you!
 
N

NoExcuses

New member
If you decide to get involved, thank you in advance. You are doing an amazing service to the CF community. It is because of people like you that new drugs are brought to the market.

So from the bottom of my heart, thank you, thank you, thank you!
 
N

NoExcuses

New member
If you decide to get involved, thank you in advance. You are doing an amazing service to the CF community. It is because of people like you that new drugs are brought to the market.

So from the bottom of my heart, thank you, thank you, thank you!
 
G

getahobby

New member
I seem to be following sakasuka around the forums tonight <img src="i/expressions/face-icon-small-smile.gif" border="0">

I just want to echo her statements. Volunteers are needed! If people want a cure then they need to realize that it is current patients that need to step up to the plate and be part of the studies. I guarantee there are multiple studies in everybody's centers that needs to fill enrollment.
 
G

getahobby

New member
I seem to be following sakasuka around the forums tonight <img src="i/expressions/face-icon-small-smile.gif" border="0">

I just want to echo her statements. Volunteers are needed! If people want a cure then they need to realize that it is current patients that need to step up to the plate and be part of the studies. I guarantee there are multiple studies in everybody's centers that needs to fill enrollment.
 
G

getahobby

New member
I seem to be following sakasuka around the forums tonight <img src="i/expressions/face-icon-small-smile.gif" border="0">

I just want to echo her statements. Volunteers are needed! If people want a cure then they need to realize that it is current patients that need to step up to the plate and be part of the studies. I guarantee there are multiple studies in everybody's centers that needs to fill enrollment.
 
2

2perfectboys

Guest
Hi Sean,
My son has been done 3 days of treatment in the study. And I am very happy. Yes, the 3 a day every 6 hrs r not the greatest, especially considering we went from one treatment (3mins albuterol/3 mins pulmozyme eflow) to 45 mins of study drug. But so far it seems it already doing something. Guess we could be on Placebo, but I feeling pretty confident we r not and the study cordinator seems to think we r on drug with how he has been responding. He never coughed up anything. Did when he the first few times he used hypertonic saline last spring. Everytime after he does the dunufosol and he does huff coughs, he brings mucus up.

The nice thing about this study is that it is a Phase III, so the drugs safety efficacy has really been established, now it is on a larger scale and specific dose. And no matter if u got the study drug or placebo at firstt, 6 months into the study everybody is given dunufosol. The way I look at it, is if this drug turns out to be the next breakthrough in CF, which it's about time, 10 years too late, I would want my child to get it as soon as he can. He's already 9 years behind, if or when this drug is on the market (2009?) infants taking it will have significantly less lung inflamation when they r 9, even compared to my son, who has never had no lung nissues.

So I say, go for it, give it a try, and your child wil love the $800 they get.

Lori
 
2

2perfectboys

Guest
Hi Sean,
My son has been done 3 days of treatment in the study. And I am very happy. Yes, the 3 a day every 6 hrs r not the greatest, especially considering we went from one treatment (3mins albuterol/3 mins pulmozyme eflow) to 45 mins of study drug. But so far it seems it already doing something. Guess we could be on Placebo, but I feeling pretty confident we r not and the study cordinator seems to think we r on drug with how he has been responding. He never coughed up anything. Did when he the first few times he used hypertonic saline last spring. Everytime after he does the dunufosol and he does huff coughs, he brings mucus up.

The nice thing about this study is that it is a Phase III, so the drugs safety efficacy has really been established, now it is on a larger scale and specific dose. And no matter if u got the study drug or placebo at firstt, 6 months into the study everybody is given dunufosol. The way I look at it, is if this drug turns out to be the next breakthrough in CF, which it's about time, 10 years too late, I would want my child to get it as soon as he can. He's already 9 years behind, if or when this drug is on the market (2009?) infants taking it will have significantly less lung inflamation when they r 9, even compared to my son, who has never had no lung nissues.

So I say, go for it, give it a try, and your child wil love the $800 they get.

Lori
 
2

2perfectboys

Guest
Hi Sean,
My son has been done 3 days of treatment in the study. And I am very happy. Yes, the 3 a day every 6 hrs r not the greatest, especially considering we went from one treatment (3mins albuterol/3 mins pulmozyme eflow) to 45 mins of study drug. But so far it seems it already doing something. Guess we could be on Placebo, but I feeling pretty confident we r not and the study cordinator seems to think we r on drug with how he has been responding. He never coughed up anything. Did when he the first few times he used hypertonic saline last spring. Everytime after he does the dunufosol and he does huff coughs, he brings mucus up.

The nice thing about this study is that it is a Phase III, so the drugs safety efficacy has really been established, now it is on a larger scale and specific dose. And no matter if u got the study drug or placebo at firstt, 6 months into the study everybody is given dunufosol. The way I look at it, is if this drug turns out to be the next breakthrough in CF, which it's about time, 10 years too late, I would want my child to get it as soon as he can. He's already 9 years behind, if or when this drug is on the market (2009?) infants taking it will have significantly less lung inflamation when they r 9, even compared to my son, who has never had no lung nissues.

So I say, go for it, give it a try, and your child wil love the $800 they get.

Lori
 
S

SEANP

New member
Thanks to all who responded. I think we will go ahead and do it. It is a scary venture, but I think it is the right thing to do. I dont want my son to be a guinea pig, but if this drug can help, I want it to come to market as soon as possible to help everyone.
 
S

SEANP

New member
Thanks to all who responded. I think we will go ahead and do it. It is a scary venture, but I think it is the right thing to do. I dont want my son to be a guinea pig, but if this drug can help, I want it to come to market as soon as possible to help everyone.
 
S

SEANP

New member
Thanks to all who responded. I think we will go ahead and do it. It is a scary venture, but I think it is the right thing to do. I dont want my son to be a guinea pig, but if this drug can help, I want it to come to market as soon as possible to help everyone.
 
D

damiensmom

New member
I think its a wonderfull thing. You can remember that you contributed to the fight for a better life not just for your child but the children to come.
 
D

damiensmom

New member
I think its a wonderfull thing. You can remember that you contributed to the fight for a better life not just for your child but the children to come.
 
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