DF508/i507del I have just been thrown off phase 3 combo trial.

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ashamalie

New member
I don't have any additional info for you, but my son has the same genes. I would be interested in seeing other information on the way meds work with the genes, and the way the genes are compared to each other. We have always been told that everyone is different, even when they have the same genetics. Like a brother and sister with DDF508 can have completely different effects....
 
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GlennyB

New member
It's there - my post is the last one, they think many people have i507 and that it's been mis identified as f508 :). It also is indicated in French origins.
 
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Printer

Active member
I'm not clear as to your question. You do not qualify for the study. OK neither do I or many others out here. Your situation is what it is as my, and others, can't be considered for this study.

Maybe next time,
 
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suziesmom

New member
My daughter has one Delta F508. The other we just learned last year (she is 23) is c.869+1 869+4 delGTAAinsACATTATT. Guess there is no short way to say that one! They also said that she is the only one (on record) with that mutation. Does anyone out there know what I can do to find out more information?
 
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Rachie

New member
Thanks so much susiesmom and glenny. Good news looks like I'm now eligible for another study that may also involve open label. Fingers crossed apparently i507del v similar to f508 mind you a miss can be a mile in genetics! Hoping we all get a chance soon x
 
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Allansarmy

Guest
My son too, curious about the new drug Kalydeco I have read that the drug can still help other mutations even though they have never done the studies. I would be willing to try this for my son. Fortunately (Yes I said fortunately) double edged sword here, his PFTs have been good so he did not qualify for the study. That's good right? Yes, I am telling myself yes of course its good. I just want him feeling better and stop the recurring infections he gets about 9 times a year ;x
 
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