You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
clinical trial
- Thread starter biz
- Start date
mbrandazzo
New member
Hi,
I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
mbrandazzo
New member
Hi,
I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
mbrandazzo
New member
Hi,
<br />
<br />I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
<br />
<br />I think it is awesome he is so young and participating in the trial for Denufesol! I have heard really good things about it from my son's doctor. Good luck and thank you!!!
M
Mommafirst
Guest
I've heard positive things as well, you'll have to let us know how it goes...when you are allowed.
M
Mommafirst
Guest
I've heard positive things as well, you'll have to let us know how it goes...when you are allowed.
M
Mommafirst
Guest
I've heard positive things as well, you'll have to let us know how it goes...when you are allowed.
i knw i am so excited about this when i first heard bout it over a year ago i wanted aidan to get on it but he was too young and it wasnt being used on little ones. now they are doing the trial for 2yr olds up to teen. they havnt said anything yet about me not talking about it. so what i do know is its a week long. the first day we do it there at clinic then we do the other 5 days at home and the last day is back at clinic. the one thing that our doc said that has been an issue for older cfers is that its 3 times a day. so they are also trying to work on cutting that down.
-----------------------------------------
Elizabeth
-----------------------------------------
Elizabeth
i knw i am so excited about this when i first heard bout it over a year ago i wanted aidan to get on it but he was too young and it wasnt being used on little ones. now they are doing the trial for 2yr olds up to teen. they havnt said anything yet about me not talking about it. so what i do know is its a week long. the first day we do it there at clinic then we do the other 5 days at home and the last day is back at clinic. the one thing that our doc said that has been an issue for older cfers is that its 3 times a day. so they are also trying to work on cutting that down.
-----------------------------------------
Elizabeth
-----------------------------------------
Elizabeth
i knw i am so excited about this when i first heard bout it over a year ago i wanted aidan to get on it but he was too young and it wasnt being used on little ones. now they are doing the trial for 2yr olds up to teen. they havnt said anything yet about me not talking about it. so what i do know is its a week long. the first day we do it there at clinic then we do the other 5 days at home and the last day is back at clinic. the one thing that our doc said that has been an issue for older cfers is that its 3 times a day. so they are also trying to work on cutting that down.
<br />-----------------------------------------
<br />Elizabeth
<br />-----------------------------------------
<br />Elizabeth
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight, etc.
We have our final visit next week and I think they are going to continue to do the open-label extension.
One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
But we are glad to be in it, and would do it again. I hope you also have a good experience.
We have our final visit next week and I think they are going to continue to do the open-label extension.
One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
But we are glad to be in it, and would do it again. I hope you also have a good experience.
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight, etc.
We have our final visit next week and I think they are going to continue to do the open-label extension.
One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
But we are glad to be in it, and would do it again. I hope you also have a good experience.
We have our final visit next week and I think they are going to continue to do the open-label extension.
One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
But we are glad to be in it, and would do it again. I hope you also have a good experience.
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight, etc.
<br />
<br />We have our final visit next week and I think they are going to continue to do the open-label extension.
<br />
<br />One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
<br />
<br />The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
<br />
<br />But we are glad to be in it, and would do it again. I hope you also have a good experience.
<br />
<br />
<br />
<br />We have our final visit next week and I think they are going to continue to do the open-label extension.
<br />
<br />One advantage has been that Denufosol replaced Hypertonic Saline, which DD absolutley hated, so that has been a huge plus. Also she has gained lots of extra practice blowing PFT's.
<br />
<br />The disadvantages have been lots of blood draws <img src="i/expressions/face-icon-small-sad.gif" border="0"> and that 3-times-a-day thing you mentioned! We had previously only done breathing treatments in the morning and the evening so the middle of the day was (and is) tough. (I'm sure I sound like a big whiner to many of you!)
<br />
<br />But we are glad to be in it, and would do it again. I hope you also have a good experience.
<br />
<br />
hey dana i know just what u mean about doing this 3 times a day with aidan he does his chest pt with inhalers twice a day now so im going to have to add the denefosul in the middle of that at least it will be with out the vest and just by itself. im glad to hear it replaces the hypertonic. aidan did well with it but every time i got him up to 5% he would get a sore throat and raspy voice. so i had to stop it. aidan doest do pft's yet. but apparently on our next visit the doc is introducing a new this for the little ones. its similar to pft's but they dont have to blow out and keep on with it. i hold his cheecks and he breathes regularfor it. im guessing its a resting pft? then on the next visit do it again and so on and they can compare results that way. so maybe we will do it in the trial also. they didnt say anything about drawing blood i was told just vitals to make sure he isnt having some reaction to it.
do you ever know if u got the placebo or not?
-------------------------------------
Elizabeth
do you ever know if u got the placebo or not?
-------------------------------------
Elizabeth
hey dana i know just what u mean about doing this 3 times a day with aidan he does his chest pt with inhalers twice a day now so im going to have to add the denefosul in the middle of that at least it will be with out the vest and just by itself. im glad to hear it replaces the hypertonic. aidan did well with it but every time i got him up to 5% he would get a sore throat and raspy voice. so i had to stop it. aidan doest do pft's yet. but apparently on our next visit the doc is introducing a new this for the little ones. its similar to pft's but they dont have to blow out and keep on with it. i hold his cheecks and he breathes regularfor it. im guessing its a resting pft? then on the next visit do it again and so on and they can compare results that way. so maybe we will do it in the trial also. they didnt say anything about drawing blood i was told just vitals to make sure he isnt having some reaction to it.
do you ever know if u got the placebo or not?
-------------------------------------
Elizabeth
do you ever know if u got the placebo or not?
-------------------------------------
Elizabeth