Vertex drugs show promise with DF508

[dasjsmum]

I disagree, I think that a separate category will mean that lots of people will not be aware of research that's going on (unless someone also posts on the general forum).
<br />
<br />Research brings great hope to people, I wanted everyone to know about the fantastic results my son had (is still having) with v770 and updated people throughout the trial stage 3 so everyone knew whether it was working (because it turned out he was on the real drug and not placebo, and we knew straight away due to how much improvement he had).
<br />
<br />The problem with the vertex trials is that you're not allowed to talk about them on open forum due to contract, but I updated everyone who requested privately <img src="i/expressions/face-icon-small-smile.gif" border="0"> It really was/is very encouraging for people <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lizlas]

<P>I just spoke to my cf Dr. on Tuesday and she said for the Df508, we need 809 and another drug ( she didnt give me name) and our clinic will start on trials shortly,....i will be in it...in less than 6 mos.</P>
<P>does anyone know the name of the other drug?</P>
<P>thanks</P>
<P>liz</P>

 

[lizlas]

<P>I just spoke to my cf Dr. on Tuesday and she said for the Df508, we need 809 and another drug ( she didnt give me name) and our clinic will start on trials shortly,....i will be in it...in less than 6 mos.</P>
<P>does anyone know the name of the other drug?</P>
<P>thanks</P>
<P>liz</P>

 

[lizlas]

<P>I just spoke to my cf Dr. on Tuesday and she said for the Df508, we need 809 and another drug ( she didnt give me name) and our clinic will start on trials shortly,....i will be in it...in less than 6 mos.</P>
<P>does anyone know the name of the other drug?</P>
<P>thanks</P>
<P>liz</P>

 

[Printer]

If you go to CFF.ORG you will get alot of info on the Vertex experimental drugs.

Basically VX 770 only deals with G551D because that mutation sits on top of the cell and 770 can easily get to it to activate it.

VX 866 (or whatever) hopefully will move D F508 up to the top of the cell (location) as G551D. Then 770 is introduced and, again hopefully, will activate D F508.

Other mutations could follow suit.

That is my LAYMANS explation so check out cff.org.

 

[Printer]

If you go to CFF.ORG you will get alot of info on the Vertex experimental drugs.

Basically VX 770 only deals with G551D because that mutation sits on top of the cell and 770 can easily get to it to activate it.

VX 866 (or whatever) hopefully will move D F508 up to the top of the cell (location) as G551D. Then 770 is introduced and, again hopefully, will activate D F508.

Other mutations could follow suit.

That is my LAYMANS explation so check out cff.org.

 

[Printer]

If you go to CFF.ORG you will get alot of info on the Vertex experimental drugs.
<br />
<br />Basically VX 770 only deals with G551D because that mutation sits on top of the cell and 770 can easily get to it to activate it.
<br />
<br />VX 866 (or whatever) hopefully will move D F508 up to the top of the cell (location) as G551D. Then 770 is introduced and, again hopefully, will activate D F508.
<br />
<br />Other mutations could follow suit.
<br />
<br />That is my LAYMANS explation so check out cff.org.

 

[azdesertrat]

This is so exciting!
I was fortunate to have been in the clinical trials for Pulmozyme back 'in the day'.
My Wife fought her ass off to get me into the program. She did it!
I saw almost immediate improvement.
I was still trucking cross-country at the time. I had an inverter in which to plug my nebulizer. I would sit on my bed in the sleeper, watch TV & do my treatments of Pulmozyme & then albuterol.
When I was in a REAL rush I would run the hose from the sleeper into the driver's seat & inhale my stuff going down the road!
It's funny how a feller can 'adapt, improvise & OVERCOME'!
I sure hope this new med is all it's cracked up to be. If it works in everyone else as good as it has in Lauren it will be a real breakthrough! Thank you Lord!
Too late for me but I sure am happy for the younger 'CF'ers'.
All our best to you all... 'Becky & Pat'.

 

[azdesertrat]

This is so exciting!
I was fortunate to have been in the clinical trials for Pulmozyme back 'in the day'.
My Wife fought her ass off to get me into the program. She did it!
I saw almost immediate improvement.
I was still trucking cross-country at the time. I had an inverter in which to plug my nebulizer. I would sit on my bed in the sleeper, watch TV & do my treatments of Pulmozyme & then albuterol.
When I was in a REAL rush I would run the hose from the sleeper into the driver's seat & inhale my stuff going down the road!
It's funny how a feller can 'adapt, improvise & OVERCOME'!
I sure hope this new med is all it's cracked up to be. If it works in everyone else as good as it has in Lauren it will be a real breakthrough! Thank you Lord!
Too late for me but I sure am happy for the younger 'CF'ers'.
All our best to you all... 'Becky & Pat'.

 

[azdesertrat]

This is so exciting!
<br />I was fortunate to have been in the clinical trials for Pulmozyme back 'in the day'.
<br />My Wife fought her ass off to get me into the program. She did it!
<br />I saw almost immediate improvement.
<br />I was still trucking cross-country at the time. I had an inverter in which to plug my nebulizer. I would sit on my bed in the sleeper, watch TV & do my treatments of Pulmozyme & then albuterol.
<br />When I was in a REAL rush I would run the hose from the sleeper into the driver's seat & inhale my stuff going down the road!
<br />It's funny how a feller can 'adapt, improvise & OVERCOME'!
<br />I sure hope this new med is all it's cracked up to be. If it works in everyone else as good as it has in Lauren it will be a real breakthrough! Thank you Lord!
<br />Too late for me but I sure am happy for the younger 'CF'ers'.
<br />All our best to you all... 'Becky & Pat'.