Terminating pregnancy?

laxgirl

New member
We're still here. We have not terminated yet, in fact, we had the appointment today and didn't go. We are hanging in there. I honestly think it is something we can live with, without a doubt, we just have a fear that our kid could be one of those cases that's really severe. Anyone else with DF508 and W1282X and doing okay? Margarita Chic, I see your daughter has the same mutations as ours, how's she doing?
 

laxgirl

New member
We're still here. We have not terminated yet, in fact, we had the appointment today and didn't go. We are hanging in there. I honestly think it is something we can live with, without a doubt, we just have a fear that our kid could be one of those cases that's really severe. Anyone else with DF508 and W1282X and doing okay? Margarita Chic, I see your daughter has the same mutations as ours, how's she doing?
 

laxgirl

New member
We're still here. We have not terminated yet, in fact, we had the appointment today and didn't go. We are hanging in there. I honestly think it is something we can live with, without a doubt, we just have a fear that our kid could be one of those cases that's really severe. Anyone else with DF508 and W1282X and doing okay? Margarita Chic, I see your daughter has the same mutations as ours, how's she doing?
 

laxgirl

New member
We're still here. We have not terminated yet, in fact, we had the appointment today and didn't go. We are hanging in there. I honestly think it is something we can live with, without a doubt, we just have a fear that our kid could be one of those cases that's really severe. Anyone else with DF508 and W1282X and doing okay? Margarita Chic, I see your daughter has the same mutations as ours, how's she doing?
 

laxgirl

New member
We're still here. We have not terminated yet, in fact, we had the appointment today and didn't go. We are hanging in there. I honestly think it is something we can live with, without a doubt, we just have a fear that our kid could be one of those cases that's really severe. Anyone else with DF508 and W1282X and doing okay? Margarita Chic, I see your daughter has the same mutations as ours, how's she doing?
 

laxgirl

New member
Also, for anyone who's interested, we emailed the company who makes PTC124 asking them how far out they think the drug may be from consumers, and here's their response:

PTC124 may have the potential to treat cystic fibrosis (CF) in which a nonsense mutation is the basis for the disease. W1282X is a nonsense mutation, and PTC124 may have the potential to be effective.

The short-term (2a) trial of PTC124 in cystic fibrosis (CF) in the U.S. and Israel is complete and the data has been reported. The longer term (extension) study in Israel has completed the treatment phase and the data is being analyzed. The French/Belgian study completed enrollment in '07 and is expected to complete treatment in '08.

The most recent information released from these trials can be accessed on our website at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/4.1_news.aspx#PR10052007">http://www.ptcbio.com/4.1_news.aspx#PR10052007</a>

We expect to begin Phase 2b trials in CF in the second quarter of 2008. Although there will be multiple sites in the U.S. and other countries, locations have not been finalized.

It is premature to speculate when PTC124 will be on the market. Currently, the drug is not yet commercially available, nor is it available other than in a clinical trial. It could potentially be several years until PTC124 is on the market.
 

laxgirl

New member
Also, for anyone who's interested, we emailed the company who makes PTC124 asking them how far out they think the drug may be from consumers, and here's their response:

PTC124 may have the potential to treat cystic fibrosis (CF) in which a nonsense mutation is the basis for the disease. W1282X is a nonsense mutation, and PTC124 may have the potential to be effective.

The short-term (2a) trial of PTC124 in cystic fibrosis (CF) in the U.S. and Israel is complete and the data has been reported. The longer term (extension) study in Israel has completed the treatment phase and the data is being analyzed. The French/Belgian study completed enrollment in '07 and is expected to complete treatment in '08.

The most recent information released from these trials can be accessed on our website at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/4.1_news.aspx#PR10052007">http://www.ptcbio.com/4.1_news.aspx#PR10052007</a>

We expect to begin Phase 2b trials in CF in the second quarter of 2008. Although there will be multiple sites in the U.S. and other countries, locations have not been finalized.

It is premature to speculate when PTC124 will be on the market. Currently, the drug is not yet commercially available, nor is it available other than in a clinical trial. It could potentially be several years until PTC124 is on the market.
 

laxgirl

New member
Also, for anyone who's interested, we emailed the company who makes PTC124 asking them how far out they think the drug may be from consumers, and here's their response:

PTC124 may have the potential to treat cystic fibrosis (CF) in which a nonsense mutation is the basis for the disease. W1282X is a nonsense mutation, and PTC124 may have the potential to be effective.

The short-term (2a) trial of PTC124 in cystic fibrosis (CF) in the U.S. and Israel is complete and the data has been reported. The longer term (extension) study in Israel has completed the treatment phase and the data is being analyzed. The French/Belgian study completed enrollment in '07 and is expected to complete treatment in '08.

The most recent information released from these trials can be accessed on our website at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/4.1_news.aspx#PR10052007">http://www.ptcbio.com/4.1_news.aspx#PR10052007</a>

We expect to begin Phase 2b trials in CF in the second quarter of 2008. Although there will be multiple sites in the U.S. and other countries, locations have not been finalized.

It is premature to speculate when PTC124 will be on the market. Currently, the drug is not yet commercially available, nor is it available other than in a clinical trial. It could potentially be several years until PTC124 is on the market.
 

laxgirl

New member
Also, for anyone who's interested, we emailed the company who makes PTC124 asking them how far out they think the drug may be from consumers, and here's their response:

PTC124 may have the potential to treat cystic fibrosis (CF) in which a nonsense mutation is the basis for the disease. W1282X is a nonsense mutation, and PTC124 may have the potential to be effective.

The short-term (2a) trial of PTC124 in cystic fibrosis (CF) in the U.S. and Israel is complete and the data has been reported. The longer term (extension) study in Israel has completed the treatment phase and the data is being analyzed. The French/Belgian study completed enrollment in '07 and is expected to complete treatment in '08.

The most recent information released from these trials can be accessed on our website at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/4.1_news.aspx#PR10052007">http://www.ptcbio.com/4.1_news.aspx#PR10052007</a>

We expect to begin Phase 2b trials in CF in the second quarter of 2008. Although there will be multiple sites in the U.S. and other countries, locations have not been finalized.

It is premature to speculate when PTC124 will be on the market. Currently, the drug is not yet commercially available, nor is it available other than in a clinical trial. It could potentially be several years until PTC124 is on the market.
 

laxgirl

New member
Also, for anyone who's interested, we emailed the company who makes PTC124 asking them how far out they think the drug may be from consumers, and here's their response:
<br />
<br />PTC124 may have the potential to treat cystic fibrosis (CF) in which a nonsense mutation is the basis for the disease. W1282X is a nonsense mutation, and PTC124 may have the potential to be effective.
<br />
<br />The short-term (2a) trial of PTC124 in cystic fibrosis (CF) in the U.S. and Israel is complete and the data has been reported. The longer term (extension) study in Israel has completed the treatment phase and the data is being analyzed. The French/Belgian study completed enrollment in '07 and is expected to complete treatment in '08.
<br />
<br />The most recent information released from these trials can be accessed on our website at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/4.1_news.aspx#PR10052007">http://www.ptcbio.com/4.1_news.aspx#PR10052007</a>
<br />
<br />We expect to begin Phase 2b trials in CF in the second quarter of 2008. Although there will be multiple sites in the U.S. and other countries, locations have not been finalized.
<br />
<br />It is premature to speculate when PTC124 will be on the market. Currently, the drug is not yet commercially available, nor is it available other than in a clinical trial. It could potentially be several years until PTC124 is on the market.
 

NoExcuses

New member
Right, that's what every company must say, laxgirl, if they are currently in drug development. That's how the process works.

If they give overly confident statements that don't come to fruition, then they can get sued.

and in terms of mutations, please understand that many CFer's (even siblings) have the same two mutations but varying clinical outcomes. compliance with medication, preventative therapy, environment and modifier genes all affect clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"> so take the mutations with a grain of salt.

glad that you're still hanging in there.

if it's any bright light of hope - i just had pulmonary function tests today and I achieved a score of 102% (100% is the lung function for someone without CF). I'm in no way typical, but due to my combinations of genes, I'm supposed to have a pretty severe CF clinical outcome. Goes to show you can't predict anything....

Keep us posted on how your baby is doing <img src="i/expressions/face-icon-small-smile.gif" border="0"> When are you due?
 

NoExcuses

New member
Right, that's what every company must say, laxgirl, if they are currently in drug development. That's how the process works.

If they give overly confident statements that don't come to fruition, then they can get sued.

and in terms of mutations, please understand that many CFer's (even siblings) have the same two mutations but varying clinical outcomes. compliance with medication, preventative therapy, environment and modifier genes all affect clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"> so take the mutations with a grain of salt.

glad that you're still hanging in there.

if it's any bright light of hope - i just had pulmonary function tests today and I achieved a score of 102% (100% is the lung function for someone without CF). I'm in no way typical, but due to my combinations of genes, I'm supposed to have a pretty severe CF clinical outcome. Goes to show you can't predict anything....

Keep us posted on how your baby is doing <img src="i/expressions/face-icon-small-smile.gif" border="0"> When are you due?
 

NoExcuses

New member
Right, that's what every company must say, laxgirl, if they are currently in drug development. That's how the process works.

If they give overly confident statements that don't come to fruition, then they can get sued.

and in terms of mutations, please understand that many CFer's (even siblings) have the same two mutations but varying clinical outcomes. compliance with medication, preventative therapy, environment and modifier genes all affect clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"> so take the mutations with a grain of salt.

glad that you're still hanging in there.

if it's any bright light of hope - i just had pulmonary function tests today and I achieved a score of 102% (100% is the lung function for someone without CF). I'm in no way typical, but due to my combinations of genes, I'm supposed to have a pretty severe CF clinical outcome. Goes to show you can't predict anything....

Keep us posted on how your baby is doing <img src="i/expressions/face-icon-small-smile.gif" border="0"> When are you due?
 

NoExcuses

New member
Right, that's what every company must say, laxgirl, if they are currently in drug development. That's how the process works.

If they give overly confident statements that don't come to fruition, then they can get sued.

and in terms of mutations, please understand that many CFer's (even siblings) have the same two mutations but varying clinical outcomes. compliance with medication, preventative therapy, environment and modifier genes all affect clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"> so take the mutations with a grain of salt.

glad that you're still hanging in there.

if it's any bright light of hope - i just had pulmonary function tests today and I achieved a score of 102% (100% is the lung function for someone without CF). I'm in no way typical, but due to my combinations of genes, I'm supposed to have a pretty severe CF clinical outcome. Goes to show you can't predict anything....

Keep us posted on how your baby is doing <img src="i/expressions/face-icon-small-smile.gif" border="0"> When are you due?
 

NoExcuses

New member
Right, that's what every company must say, laxgirl, if they are currently in drug development. That's how the process works.
<br />
<br />If they give overly confident statements that don't come to fruition, then they can get sued.
<br />
<br />and in terms of mutations, please understand that many CFer's (even siblings) have the same two mutations but varying clinical outcomes. compliance with medication, preventative therapy, environment and modifier genes all affect clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"> so take the mutations with a grain of salt.
<br />
<br />glad that you're still hanging in there.
<br />
<br />if it's any bright light of hope - i just had pulmonary function tests today and I achieved a score of 102% (100% is the lung function for someone without CF). I'm in no way typical, but due to my combinations of genes, I'm supposed to have a pretty severe CF clinical outcome. Goes to show you can't predict anything....
<br />
<br />Keep us posted on how your baby is doing <img src="i/expressions/face-icon-small-smile.gif" border="0"> When are you due?
 
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