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Denufosol Trial
- Thread starter dramamama
- Start date
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Hi Treehugger-
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
Do you mind me asking which clinic you are using? I only ask because only a few of the sites are actually closed to recruiting.....I am guessing you are in Pittsburg???
Have you spoken with anyone else about their results at your clinic...or have your docs let it slip?
There is a lot of mis-information about the results of the drug.....mainly, and I have heard this from researchers, the denufosol is so effective in healthier people that once the results are known...NO ONE will be willing to wait and that is going to be a problem for us, the patients, and for the foundation.
If you can...anyone reading this...participate in the trial if you are willing. You get to stay on the drug no matter what even after the trial is over.....until the drug is apporved in 2010...or 2009. Very cool....
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
So this isn't just for a certain type of mutation, etc.? This would (hypothetically, of course <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) be for everybody? (I don't qualify for the study- bummer). Even if it takes 45 minutes out of your day, if it works well, that's small compared to the time we spend sick, tired, etc. <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Not to mention, if it adds those hours back on the far end <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope these trials continue to do well!
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.
There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....
Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.
There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....
Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.
There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....
Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.
There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....
Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!