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Thread: CFTR modulation for those with TWO copy's of DDF508?

  1. #1

    CFTR modulation for those with TWO copy's of DDF508?

    OK me and my doc has talked about it and he said that i would be good for the new drug for the new gene therapy for the f508 dose anyone on here know anything about it if so please help me i cant find much online about it it kinda scars(VEST) me i have a wife and a 4 year old step son and i know what i was told was i could add years to my life witch is good but i am just scared a little bit so please help thanks so much and if you want to send it to me privet message to thanks again

  2. #2
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,035
    Hey kris,
    can you clarify..do you mean some study or are you talking about the new fda approved drug orcambi?

  3. #3
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575
    Kris, from the heading on your post, it appears you have two copies of "delta f 508". If that's correct it sounds like your doc is recommending you take the new drug by Vertex that has just been approved, known as Orkambi. It is a combination drug in one pill. One of the drugs in the combination pill is Kalydeco, the drug approved recently for those with DF551 that has had so much success. The second drug in the pill is a more recent Vertex creation. This combination pill has been shown to decrease exacerbations significantly. That means it could keep you out of the hospital or off antibiotics as frequently as you might otherwise need. It also has significantly increased lung function, BMI, and has other benefits. Aboveall can point you to lots of info on it!
    I can imagine it's really scary to some to take another pill, especially when it's so new! I'm sure your docs will watch you closely to make sure you do well on it. You can even call Vertex, the manufacturer, with any questions or concerns. Their website is www.vrtx.com and if you look at the section on press releases, it will give you some more info. http://investors.vrtx.com/releasedet...leaseID=920512

    To find more info, just ask Aboveall and search "Orkambi" on this forum or the internet. Just make sure you're going to a reliable site if you leave this one!

    There are also several studies going on for people with at least one copy of DF508. If your doc is recruiting for those studies, let us know which one......!

    one!

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