To those on kalydeco---Lauren (your thoughts, please)

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saveferris2009

New member
Ya I was fully prepared to ask other CF docs (I know a few that would have given it to me) if mine didn't. I think your outlook is perfect. There was no way I wasn't going to try the drug.... just to try.

WHat mutations do you have, Icomudrox?
 
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saveferris2009

New member
Ya I was fully prepared to ask other CF docs (I know a few that would have given it to me) if mine didn't. I think your outlook is perfect. There was no way I wasn't going to try the drug.... just to try.

WHat mutations do you have, Icomudrox?
 
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Incomudrox

New member
I have DF508 I am waiting on John Hopkins to actually find out the other one. Ambry lost my spit sample..... other wise I would have known the 2nd some 2 months ago. UPENN is sending my Blood to JH for their CFRI project they are working on.
 
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Incomudrox

New member
I have DF508 I am waiting on John Hopkins to actually find out the other one. Ambry lost my spit sample..... other wise I would have known the 2nd some 2 months ago. UPENN is sending my Blood to JH for their CFRI project they are working on.
 
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saveferris2009

New member
Cool. I'm interested to hear what your experience with Kalydeco is.

Sorry Ambry lost your sample....that's annoying.

Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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saveferris2009

New member
Cool. I'm interested to hear what your experience with Kalydeco is.

Sorry Ambry lost your sample....that's annoying.

Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Cool. I'm interested to hear what your experience with Kalydeco is. Sorry Ambry lost your sample....that's annoying. Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src=""></end quote>
I will def pick out of what you posted to add to my ammunition I don't want to have to go away and come back with more info, I'm going with everything the first time. It is quite annoying that my sample was lost. *sigh* I also heart my insurance 99% of the time. I hope to have an answer in a few weeks time as to what will be going on.
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Cool. I'm interested to hear what your experience with Kalydeco is. Sorry Ambry lost your sample....that's annoying. Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src=""></end quote>
I will def pick out of what you posted to add to my ammunition I don't want to have to go away and come back with more info, I'm going with everything the first time. It is quite annoying that my sample was lost. *sigh* I also heart my insurance 99% of the time. I hope to have an answer in a few weeks time as to what will be going on.
 
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dasjsmum

New member
Oh Amy! Im so excited for you (and everyone else), just read you blog! I hope this works for you all to some degree at least.
 
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dasjsmum

New member
Oh Amy! Im so excited for you (and everyone else), just read you blog! I hope this works for you all to some degree at least.
 
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dasjsmum

New member
Here is a link to the FB page 'praying for succes 770/809 (I think Lindsay's mum started it) for anyone who is interested in hearing about people's experiences since starting Kalydeco. Some people have posted pics of the express van delivering the drug and of their son taking his first blue pill hahha...bottle of champagne on the table...we feel their joy

http://www.facebook.com/groups/153375788050316/
 
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dasjsmum

New member
Here is a link to the FB page 'praying for succes 770/809 (I think Lindsay's mum started it) for anyone who is interested in hearing about people's experiences since starting Kalydeco. Some people have posted pics of the express van delivering the drug and of their son taking his first blue pill hahha...bottle of champagne on the table...we feel their joy

http://www.facebook.com/groups/153375788050316/
 
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CFcarebear

New member
My husband, Jake, has been on it for about 1 1/2 months. He felt HORRIBLE for at least 2-3 weeks. He coughed up very sticky, dense thick mucus and he said the color is much different (like the color of old infection) He is still to this day coughing up that same stuff, but he is feeling better. His FEV1 was 29% when he started and his last FEV1 was 35% (last week) so at least it has gone up! He said that feels chills, soreness and extreme fatigue sometimes following his pill. He also said the mucus production is sporadic and he has been doing extra long treatments and more of them since his coughs have been more productive.

~Emily
 
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CFcarebear

New member
My husband, Jake, has been on it for about 1 1/2 months. He felt HORRIBLE for at least 2-3 weeks. He coughed up very sticky, dense thick mucus and he said the color is much different (like the color of old infection) He is still to this day coughing up that same stuff, but he is feeling better. His FEV1 was 29% when he started and his last FEV1 was 35% (last week) so at least it has gone up! He said that feels chills, soreness and extreme fatigue sometimes following his pill. He also said the mucus production is sporadic and he has been doing extra long treatments and more of them since his coughs have been more productive.

~Emily
 
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