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chroma7
02-22-2012, 07:50 PM
My son is now in a trial with 770/809. He is starting out on just 809 for 2 weeks. Then he will start it in combo with 770. He is a Double Delta508.
Anyone who has been in this trail that has any positive affects?
And what is the differnce with 661 in combo with 770?

chroma7
02-22-2012, 07:50 PM
My son is now in a trial with 770/809. He is starting out on just 809 for 2 weeks. Then he will start it in combo with 770. He is a Double Delta508.
Anyone who has been in this trail that has any positive affects?
And what is the differnce with 661 in combo with 770?

Anomie
02-22-2012, 09:39 PM
I don't think they are allowed to discuss their results publicly. Others have asked similar questions on this site without much luck.
The 661 is similar to the 809 in the way that it is designed to properly fold the protein to get it to the cell surface. Our doctor told us that the deltas might need all three of the vertex drugs.

Best of luck to you in the trials!

Anomie
02-22-2012, 09:39 PM
I don't think they are allowed to discuss their results publicly. Others have asked similar questions on this site without much luck.
The 661 is similar to the 809 in the way that it is designed to properly fold the protein to get it to the cell surface. Our doctor told us that the deltas might need all three of the vertex drugs.

Best of luck to you in the trials!

cfsucks
02-29-2012, 02:17 PM
just curious- if the combo of 809 and 770 work, but they find that 661+770+809 work better will they wait till all three are approved or start people on the 809/770 combo?

cfsucks
02-29-2012, 02:17 PM
just curious- if the combo of 809 and 770 work, but they find that 661+770+809 work better will they wait till all three are approved or start people on the 809/770 combo?

chroma7
02-29-2012, 03:14 PM
He just started 809 or placebo only for the first two weeks. He will start 770 or placebo with it on Monday. I'm pretty sure hes been on the 809 at least to some extent. He takes three pills and they are testing dosage. One in four chance they are all placebo and so on. He has been coughing and spitting ALLOT more. He doesn't say he feels much better yet.

As far as my 661 research goes they aren't on the CF website for recruiting. On the trial website when you email the site in Pittsburgh you get a returned bad email. If anyone has any more info on the 661 like where and when they are testing would be nice. My site for the trial knows nothing about a 661 trial.

chroma7
02-29-2012, 03:14 PM
He just started 809 or placebo only for the first two weeks. He will start 770 or placebo with it on Monday. I'm pretty sure hes been on the 809 at least to some extent. He takes three pills and they are testing dosage. One in four chance they are all placebo and so on. He has been coughing and spitting ALLOT more. He doesn't say he feels much better yet.

As far as my 661 research goes they aren't on the CF website for recruiting. On the trial website when you email the site in Pittsburgh you get a returned bad email. If anyone has any more info on the 661 like where and when they are testing would be nice. My site for the trial knows nothing about a 661 trial.

rainsmom
02-29-2012, 06:45 PM
how old is your son and where are you doing your trial at?

rainsmom
02-29-2012, 06:45 PM
how old is your son and where are you doing your trial at?

chroma7
02-29-2012, 07:05 PM
my son is 20. im from NY. dont want to say exactly where the trial is.

chroma7
02-29-2012, 07:05 PM
my son is 20. im from NY. dont want to say exactly where the trial is.

HDsporster
03-01-2012, 01:43 AM
I would love to take part in a trial..Im from seekonk ma..does any1 know where trials are taking place in my area?

HDsporster
03-01-2012, 01:43 AM
I would love to take part in a trial..Im from seekonk ma..does any1 know where trials are taking place in my area?

chroma7
03-01-2012, 10:31 AM
Just go here: http://www.cff.org/research/ClinicalResearch/Find/ Thats how I got my son involved. I have to travel. But if you stay with it, the drug company will pick up some costs and you get paid (though not very much).

chroma7
03-01-2012, 10:31 AM
Just go here: http://www.cff.org/research/ClinicalResearch/Find/ Thats how I got my son involved. I have to travel. But if you stay with it, the drug company will pick up some costs and you get paid (though not very much).