Bad news about denufosol trials :-(

[Mommafirst]

That is a huge bummer. In just the 4+ years we've been in the CF world, there seems to be several disappointing results. I hate that. It makes me cynical that other meds like the vertex drugs and atalauren will really do all that they promise to.

 

[LisaGreene]

I know.... it's so hard. This is the first really "big" drug I've experienced failure on, too. I'm kinda sad today. But let's stay hopeful and don't give up!! There are other things in the pipeline.

And of course we need to be strong and hopeful for our kids. Remember:

"Hope sees the invisible, feels the intangible, and achieves the impossible."

Hugs and HOPE! Lisa

 

[LisaGreene]

I know.... it's so hard. This is the first really "big" drug I've experienced failure on, too. I'm kinda sad today. But let's stay hopeful and don't give up!! There are other things in the pipeline.

And of course we need to be strong and hopeful for our kids. Remember:

"Hope sees the invisible, feels the intangible, and achieves the impossible."

Hugs and HOPE! Lisa

 

[LisaGreene]

I know.... it's so hard. This is the first really "big" drug I've experienced failure on, too. I'm kinda sad today. But let's stay hopeful and don't give up!! There are other things in the pipeline.
<br />
<br />And of course we need to be strong and hopeful for our kids. Remember:
<br />
<br />"Hope sees the invisible, feels the intangible, and achieves the impossible."
<br />
<br />Hugs and HOPE! Lisa

 

[ktsmom]

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial.

My sadness is at the loss of this drug's promise: to do an end-around of the basic default in the chloride transport at the cellular level; to be an "early disease state intervention" that didn't just treat symptoms. The science of this particular drug has been disproved.

I agree that it makes you pause a little, maybe temper the optimism you feel about other drugs in the pipeline. But we will continue to hope that there is better science out there. Come on Vertex.....

 

[ktsmom]

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial.

My sadness is at the loss of this drug's promise: to do an end-around of the basic default in the chloride transport at the cellular level; to be an "early disease state intervention" that didn't just treat symptoms. The science of this particular drug has been disproved.

I agree that it makes you pause a little, maybe temper the optimism you feel about other drugs in the pipeline. But we will continue to hope that there is better science out there. Come on Vertex.....

 

[ktsmom]

I am surprised at how saddened I have been by this news. It's not at all about the extra effort that DD and the family have been through to test the drug - we've had some definite benefits from participating in the trial.
<br />
<br />My sadness is at the loss of this drug's promise: to do an end-around of the basic default in the chloride transport at the cellular level; to be an "early disease state intervention" that didn't just treat symptoms. The science of this particular drug has been disproved.
<br />
<br />I agree that it makes you pause a little, maybe temper the optimism you feel about other drugs in the pipeline. But we will continue to hope that there is better science out there. Come on Vertex.....

 

[mneville]

I am so bummed after learning this. Now I am so skeptical of Vertex and I had so much hope riding on these. I pray so hard that they have better results. Thanks to Dana and your family for trying to make this work for all those with CF. Now will you be taken off open label?
Megan

 

[mneville]

I am so bummed after learning this. Now I am so skeptical of Vertex and I had so much hope riding on these. I pray so hard that they have better results. Thanks to Dana and your family for trying to make this work for all those with CF. Now will you be taken off open label?
Megan

 

[mneville]

I am so bummed after learning this. Now I am so skeptical of Vertex and I had so much hope riding on these. I pray so hard that they have better results. Thanks to Dana and your family for trying to make this work for all those with CF. Now will you be taken off open label?
<br />Megan

 

[SEANP]

I do not post alot, mainly lurk, but I have seen several not make it in the past, my son also participated in the Denufosol study several years ago.......dont despair....do not forget that we just had Cayston approved and with the new Altera Nebulizer treatment times were cut dramatically. So some things do make it through. I do find it interesting that just 10 days prior to yesterdays results there were several news articles talking about how great Denufosol was.

 

[SEANP]

I do not post alot, mainly lurk, but I have seen several not make it in the past, my son also participated in the Denufosol study several years ago.......dont despair....do not forget that we just had Cayston approved and with the new Altera Nebulizer treatment times were cut dramatically. So some things do make it through. I do find it interesting that just 10 days prior to yesterdays results there were several news articles talking about how great Denufosol was.

 

[SEANP]

I do not post alot, mainly lurk, but I have seen several not make it in the past, my son also participated in the Denufosol study several years ago.......dont despair....do not forget that we just had Cayston approved and with the new Altera Nebulizer treatment times were cut dramatically. So some things do make it through. I do find it interesting that just 10 days prior to yesterdays results there were several news articles talking about how great Denufosol was.

 

[Ratatosk]

Disappointed as I'd heard thru the grapevine about an adult who was in one of the earlier clinical trials and was pretty sure he had gotten the drug and was doing so well on it.

 

[Ratatosk]

Disappointed as I'd heard thru the grapevine about an adult who was in one of the earlier clinical trials and was pretty sure he had gotten the drug and was doing so well on it.

 

[Ratatosk]

Disappointed as I'd heard thru the grapevine about an adult who was in one of the earlier clinical trials and was pretty sure he had gotten the drug and was doing so well on it.

 

[Mammahuff]

Austin was also in the Tiger II Study. He was in the Open lable. Just finishing up the second year and were planning on participating in the next phase which was for two years. I guess we won't be doing that. Austin didnt mind it at all. Now i am assuming his cf doc will put him on the hypertonic saline. We will find out on monday at clinic.

 

[Mammahuff]

Austin was also in the Tiger II Study. He was in the Open lable. Just finishing up the second year and were planning on participating in the next phase which was for two years. I guess we won't be doing that. Austin didnt mind it at all. Now i am assuming his cf doc will put him on the hypertonic saline. We will find out on monday at clinic.

 

[Mammahuff]

Austin was also in the Tiger II Study. He was in the Open lable. Just finishing up the second year and were planning on participating in the next phase which was for two years. I guess we won't be doing that. Austin didnt mind it at all. Now i am assuming his cf doc will put him on the hypertonic saline. We will find out on monday at clinic.