Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would still have all the damage that is already there (our lungs). I am pancreatic sufficient so I am not sure how that would work. I would think that we would still have to do treatments. What is really interesting to me is the children taking the drug. I really dont know if Dr's will start newborns and young children on the drug especially if they are not showing CF disease. I went my whole childhood being like every other kid...it wasnt until my teens that I was diagnosed. Anyway, we are in exciting times!<BR>
K
Kaethe108
Guest
Thank you MissT!
Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
This made me really think...
These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
At the same time I would want my daughter to get it as soon as anyway possible...
Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
This made me really think...
These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
At the same time I would want my daughter to get it as soon as anyway possible...
K
Kaethe108
Guest
Thank you MissT!
Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
This made me really think...
These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
At the same time I would want my daughter to get it as soon as anyway possible...
Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
This made me really think...
These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
At the same time I would want my daughter to get it as soon as anyway possible...
K
Kaethe108
Guest
Thank you MissT!
<br />Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
<br />So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
<br />
<br />Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
<br />She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
<br />
<br />This made me really think...
<br />These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
<br />At the same time I would want my daughter to get it as soon as anyway possible...
<br />Experts are discussing that altering of lung structures (seen on CT) already happens before there is any sign of the lung disease.
<br />So it would be great, and this is actually my big hope, if there could be a safe medicament that could be taken from early childhood on to prevent the lungs / liver / etc. getting damaged at all.
<br />
<br />Our doctor was quite negative when I tried to talk with her about the new drugs yesterday...
<br />She said it will be "many many years" from now until the drug will be available on the German market. And she thinks that this is good, because in the past, she said, there were problems with new drugs (e.g. insuline) in the US that we never had, because the German Drug Approval Administration is so careful.
<br />
<br />This made me really think...
<br />These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years...
<br />At the same time I would want my daughter to get it as soon as anyway possible...
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years....</end quote></div><div><br></div><div>But that's 10, 20, or 50 years you might not have got otherwise.</div><div>I think the drugs are completely safe. In trials, people on the placebo got more side effects.</div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years....</end quote><br>But that's 10, 20, or 50 years you might not have got otherwise.I think the drugs are completely safe. In trials, people on the placebo got more side effects.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> These drugs are our big hope, but nobody knows what they do when you take them for 10, 20 or even 50 years....</end quote><br>But that's 10, 20, or 50 years you might not have got otherwise.I think the drugs are completely safe. In trials, people on the placebo got more side effects.
My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32.
He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32.
He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
My son has been on the v770 since November 2009 (i think). Speaking for him here, but he has told me that he feels great. He has not been sick once or had any antibiotics since starting the trial. He is back playing soccer etc. again....he is doing everything....he doesnt need digestive enzymes anymore (has been pancreatic insufficient since 5 mths)....he is 32.
<br />
<br />He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
<br />
<br />I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
<br />
<br />He is living his life without fear of becoming sick/sicker/dying...he is living with REAL hope. His fev1 hovers around the upper 80s (normal). I know what this drug does when you take it for two years, it makes your body work normally <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sure, maybe there is a long term effect we're not aware of yet, but the long term effect of cf was already present before my son started on vertex (770). His health was declining, he could no longer play sport and was having continuous bouts of hospitalisation.
<br />
<br />I truelly believe we can look forward to a future here with great hope....I also have two other children with cf, we just cant wait to get our hands on the drug for them also.
L
lizlas
Guest
dasjsmum<SPAN class=ftcolumntext>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P> </P>
<P>thank you</P>
<P> </P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P> </P></SPAN>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P> </P>
<P>thank you</P>
<P> </P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P> </P></SPAN>
L
lizlas
Guest
dasjsmum<SPAN class=ftcolumntext>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P></P>
<P>thank you</P>
<P></P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P></P></SPAN>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P></P>
<P>thank you</P>
<P></P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P></P></SPAN>
L
lizlas
Guest
dasjsmum<BR><SPAN class=ftcolumntext>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P></P>
<P>thank you</P>
<P></P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P></P></SPAN>
<P>OMG this is wonderful.....I am so happy for him...will he get to stay on drug?</P>
<P>Im not sure how much these new drugs will help me....as I have extensive Bronchiectasis...(BXIS).</P>
<P>that is the lung damage from constant infection...does your son have BXIS....?and is it widespred thruout most lobes?and if he doesnt know can he ask his CF doctor on next clinic appointmnet....I would really appreciate it..</P>
<P>before this drug did he have hemoptysis? severe or occasional?</P>
<P></P>
<P>thank you</P>
<P></P>
<P>to me normal means we dont take abx constantly, inhaled oral or IV, dont need chest physio, of any type, inhalations of anytype...dont constantly cough sputum, dont have hemoptysis,</P>
<P>lungs or pancreas do not interfer with work, socializing, travelling etc....but this is unrealistic for me, but for younger cfers I hope it happens soooon!!!!</P>
<P>so if these new drugs could alleviate alot of my symptoms and decrease the frequency of the exaserbations....I would take it in a heartbeat...</P>
<P></P></SPAN>
K
Kaethe108
Guest
Dear Joana!
Thanks for your reply, this is so Great to Read!
What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
I am very happy for your Son!
Thanks for your reply, this is so Great to Read!
What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
I am very happy for your Son!
K
Kaethe108
Guest
Dear Joana!
Thanks for your reply, this is so Great to Read!
What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
I am very happy for your Son!
Thanks for your reply, this is so Great to Read!
What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
I am very happy for your Son!
K
Kaethe108
Guest
Dear Joana!
<br />Thanks for your reply, this is so Great to Read!
<br />What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
<br />I am very happy for your Son!
<br />
<br />Thanks for your reply, this is so Great to Read!
<br />What is interesting is that He does Not Need the enzymes anymore. I thought once the pancreas is damaged, it would Not recover anymore.
<br />I am very happy for your Son!
<br />
Well, we thought the same about the pancreas, but he found that he didnt need the enzymes when he started on the drug. He really shouldnt ahve stopped taking them due to being in the trial but he now hasnt had any since he stopped (about 18mths ago).
He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
Well, we thought the same about the pancreas, but he found that he didnt need the enzymes when he started on the drug. He really shouldnt ahve stopped taking them due to being in the trial but he now hasnt had any since he stopped (about 18mths ago).
He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
Well, we thought the same about the pancreas, but he found that he didnt need the enzymes when he started on the drug. He really shouldnt ahve stopped taking them due to being in the trial but he now hasnt had any since he stopped (about 18mths ago).
<br />
<br />He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
<br />
<br />Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
<br />
<br />lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
<br />
<br />He is doing great, cant wait to get this drug on the market and be able to get it over here (in Australia). Fortunately my other two are relatively well, so hopefully will remain that way til we get it.
<br />
<br />Babies born with cf these days have a totally different life in front of them then when my son was born 32 years ago. Your little Livi has plenty of hopeful stuff coming her wayxx
<br />
<br />lizlas, I would say my son is experiencing your definition of 'normal'....my son doesnt have BXIS (I dont think anyhow...do you mean lung damage?)....his fev1 was declining though, but has improved significantly (as per the study). Yes, he gets to stay on it until it comes to market...we want to steal the pills off him hahaha....think of it, two blue pills a day <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Before the vertex trial my son was starting to have quite a few hassles and cf was impacting into his normal. He did have hemoptysis often, not sure what you would class as severe or occassional <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />