Vertex 770 question

Caringmom

New member
No, results of the early Phase 2 (2a?) for Vx809/Vx770 combo should be coming out in the next couple of weeks, probably in conjunction with the early Nov. CF conference in Anaheim, Ca. No one knows the results yet. More trials are planned or underway for Vx809/Vx770 and the alternate Vx661/Vx770. So keep watching for results....
 

Caringmom

New member
No, results of the early Phase 2 (2a?) for Vx809/Vx770 combo should be coming out in the next couple of weeks, probably in conjunction with the early Nov. CF conference in Anaheim, Ca. No one knows the results yet. More trials are planned or underway for Vx809/Vx770 and the alternate Vx661/Vx770. So keep watching for results....
 

musclemania70

New member
Got it. So they'll be making the big announcement at the conference I assume as to the results and how things are progressing. Hopefully they are making progress.
 

musclemania70

New member
Got it. So they'll be making the big announcement at the conference I assume as to the results and how things are progressing. Hopefully they are making progress.
 

musclemania70

New member
Got it. So they'll be making the big announcement at the conference I assume as to the results and how things are progressing. Hopefully they are making progress.
 

LouLou

New member
Two things that may have led to the comment your friend made (incorrectly so):
1) There is a investigational study underway called GOAL (stands for G551D Observational A...? L..?) My understanding from a short verbal discription (can not find anything about it online) from a clinic who is participating in this trial is that the CFF wants to know more about the sputum of the G551D patients before they start 770 and after starting it. The sputum of G551D patients were not heavily studied but most compliant patients have cultures every 3-4 mos so at least the patient and the doctor usually know if any changes have occured...but that isn't a controlled study. I have been tracking this study since 2008 and I haven't once heard anything about the drug removing colonized status.

2) My second point is that colonization of PA usually means lung damage (bronchiactisis). This drug does not repair damage already done.
 

LouLou

New member
Two things that may have led to the comment your friend made (incorrectly so):
1) There is a investigational study underway called GOAL (stands for G551D Observational A...? L..?) My understanding from a short verbal discription (can not find anything about it online) from a clinic who is participating in this trial is that the CFF wants to know more about the sputum of the G551D patients before they start 770 and after starting it. The sputum of G551D patients were not heavily studied but most compliant patients have cultures every 3-4 mos so at least the patient and the doctor usually know if any changes have occured...but that isn't a controlled study. I have been tracking this study since 2008 and I haven't once heard anything about the drug removing colonized status.

2) My second point is that colonization of PA usually means lung damage (bronchiactisis). This drug does not repair damage already done.
 

LouLou

New member
Two things that may have led to the comment your friend made (incorrectly so):
<br />1) There is a investigational study underway called GOAL (stands for G551D Observational A...? L..?) My understanding from a short verbal discription (can not find anything about it online) from a clinic who is participating in this trial is that the CFF wants to know more about the sputum of the G551D patients before they start 770 and after starting it. The sputum of G551D patients were not heavily studied but most compliant patients have cultures every 3-4 mos so at least the patient and the doctor usually know if any changes have occured...but that isn't a controlled study. I have been tracking this study since 2008 and I haven't once heard anything about the drug removing colonized status.
<br />
<br />2) My second point is that colonization of PA usually means lung damage (bronchiactisis). This drug does not repair damage already done.
 
L

lizlas

Guest
<P>LouLou...in a previous recent post Dasjmum says her 32 yr old son (they are in australia) has some BXIS (and was even having some hemoptysis)  and he is sypmtomless now, after taking VX 770....I spoke to my dr. about the new drug, vx 770  on tuesday and she said everyone in our clinic is experiencing good results, even the people with BXIS, it is not reversing damaging, but makes mucous thinner, easier to cough up, less of it ...resulting in less infections. they are not totally symptomless.</P>
<P>Dasjmums' son really is experiencing amazing results !!! even not needing enzymes anymore....!!!</P>
<P> </P>
<P>BXIS (bronchiectasis)</P>
<P> </P>
 
L

lizlas

Guest
<P>LouLou...in a previous recent post Dasjmum says her 32 yr old son (they are in australia) has some BXIS (and was even having some hemoptysis) and he is sypmtomless now, aftertaking VX 770....I spoke to my dr. about the new drug, vx 770 on tuesday and she said everyone in our clinic is experiencing good results, even the people with BXIS, it is not reversing damaging, but makes mucous thinner, easier to cough up, less of it ...resulting in less infections. they are not totally symptomless.</P>
<P>Dasjmums' son really is experiencingamazing results !!! even not needing enzymes anymore....!!!</P>
<P></P>
<P>BXIS (bronchiectasis)</P>
<P></P>
 
L

lizlas

Guest
<BR>
<P>LouLou...in a previous recent post <BR>Dasjmum says her 32 yr old son (they are in australia) has some BXIS (and was even having some hemoptysis) and he is sypmtomless now, aftertaking VX 770....I spoke to my dr. about the new drug, vx 770 on tuesday and she said everyone in our clinic is experiencing good results, even the people with BXIS, it is not reversing damaging, but makes mucous thinner, easier to cough up, less of it ...resulting in less infections. they are not totally symptomless.</P>
<P>Dasjmums' son really is experiencingamazing results !!! even not needing enzymes anymore....!!!</P>
<P></P>
<P>BXIS (bronchiectasis)</P>
<P></P>
 

rmotion

New member
Thanks for the updates!
<br>Here is a facebook page that would love your info.
<br><a href="http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/">http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/</a>
 

rmotion

New member
Thanks for the updates!
<br>Here is a facebook page that would love your info.
<br><a href="http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/">http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/</a>
 

rmotion

New member
Thanks for the updates!
<br>Here is a facebook page that would love your info.
<br><a href="http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/">http://www.facebook.com/GlutenSolutions#!/groups/153375788050316/</a>
 

rmotion

New member
Question?
It seems that there are over 1500 CF mutations, is it possible that everyone has the same mutations just aligned or presented differently. If we have DDF508 is it possible we have the GD155 visa versa.
 

rmotion

New member
Question?
It seems that there are over 1500 CF mutations, is it possible that everyone has the same mutations just aligned or presented differently. If we have DDF508 is it possible we have the GD155 visa versa.
 

rmotion

New member
Question?
<br />It seems that there are over 1500 CF mutations, is it possible that everyone has the same mutations just aligned or presented differently. If we have DDF508 is it possible we have the GD155 visa versa.
<br />
 

Printer

Active member
Every CF patient has 2 mutations. DDF508 (Double Delta F508) means that you have recieved a D F508 mutation from each of your parents. You would not have another mutation.

I'm testing my memory here so bear with me. About 10% of the CF population has DDF508. Another 75% has a single D F508 with a second mutation. The balance of the population have 2 mutations but not D F508.

I hope that this helps.

Bill
 

Printer

Active member
Every CF patient has 2 mutations. DDF508 (Double Delta F508) means that you have recieved a D F508 mutation from each of your parents. You would not have another mutation.

I'm testing my memory here so bear with me. About 10% of the CF population has DDF508. Another 75% has a single D F508 with a second mutation. The balance of the population have 2 mutations but not D F508.

I hope that this helps.

Bill
 

Printer

Active member
Every CF patient has 2 mutations. DDF508 (Double Delta F508) means that you have recieved a D F508 mutation from each of your parents. You would not have another mutation.
<br />
<br />I'm testing my memory here so bear with me. About 10% of the CF population has DDF508. Another 75% has a single D F508 with a second mutation. The balance of the population have 2 mutations but not D F508.
<br />
<br />I hope that this helps.
<br />
<br />Bill
 
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