DDF508 and pipeline drug trials (Kalydeco)~anyone been involved? Experiences

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JennyCoulon

New member
I am just wondering if anyone with the double D508 have been in any of the trials with Kalydeco or any other pipeline drugs like Kalydeco. My two boys, 13 & 7 have this mutation and I am just wondering what people's experiences have been. Thanks,
 
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sweetninis

New member
hi jenny i see your 20 months old babie has no cf did u had prenatal screening or its just a miracle that you got a baby without cf.may she prosper!
 
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JennyCoulon

New member
My husband and I are both carriers and we knew there was a chance that she would have CF also like our boys. We wouldn't have done anything differently if we would have found out early that she did have it. They watched her growth and the coloring of her bowel on the ultrasounds for the whitening that is sometimes a sign of possible CF. Our state screens for CF during the newborn screening and so that is how we found out she didn't have it. Her BM's and such were different from the boys when she was born so we pretty much knew she didn't have it but the screening just clarified it. Yes she is a miracle to not have it, it is 1 in 4 and we are 2 in 3 but I wouldn't change anything.
 
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LeChampion

New member
I will be in the study for this within a few months, my CF Care center was chosed for a clinical trial. I can't wait...The best part is even if I receive a placebo the last 6 weeks of the study everyone is on the drug...will keep you posted!
 
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JennyCoulon

New member
LeChampion so you are doing the trial for the mutations doubel DF508? What is the name of the med that is in the pipeline? That is exciting, please keep us posted.
 
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usmcdad

Guest
LeChampion: That's awesome that you are going to be a part of this near to complete drug. You rock! Please keep us up to date, especially during those last 6 weeks. My 5 year old son has both mutations of the DF508. My wife and I are both carriers. I'm new to this forum and so happy to be a part. I have been tracking Kalydeco and VX trial, my wife and I are so so excited to see this persevere. Hopefully we can all stick together through the outcome and updates!
 
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LeChampion

New member
Yes, I am DDF508. The drug is the drug combo of 770/809....Kalydeco and another drug. I am very excited. My doctor says even if this combo does not work, that within a few years she knows that there will be a drug that works for the rest of us....so keep your kids compliant and put them in the best place you can for when "our" Kalydeco comes...if it's not this combo....

I plan to blog the expereince until I am told not to. :)
 
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