809 vs 661

My husband has been thinking of getting on the phase three trial of lumacaftor plus ivacaftor. However we both have some reservations. His mutations are both delta F508. He is 28 years old. He has an FEV1 of 75%. This has been stable for the last decade. And his enzyme levels were in the normal range last time they were checked (the center still suggested he take one enzyme pill with each meal). When I read the phase 2 results for this combo, the results are dismal. There was no FEV benefit. So now for the phase III, they triple the 809 dose. This seems to be somewhat grasping at straws. Like maybe his FEV will go up 2% however all the visits are a lot of work and stress (he works full time and his work doesn't know he has cystic fibrosis) for just 2%. And we won't have enough vacation days to do other fun stuff if he does this trial. Most of those concerns are pretty trivial. However what really makes me want to suggest he not do this trial is that there has been such promising results in the phase 2 661 and ivacaftor trial and if he participates in this 809 trial, he may miss out on the opportunity to be on a phase 3 661 trial when it comes around. Anyone research these things in more detail? What do you think?
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - Category: Respiratory Medicine Authors: Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums