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  1. H

    My first update since starting Kalydeco

    Wow, that is fantastic!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd love to know how else you are feeling too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> That drives me crazy that an insurance company would cover nearly $300k med and not cover a...
  2. H

    My first update since starting Kalydeco

    Wow, that is fantastic!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd love to know how else you are feeling too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> That drives me crazy that an insurance company would cover nearly $300k med and not cover a...
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    vx 661 discussion moved

    Those are all excellent points. I really hadn't thought of the implications of giving a phase 2 med to all the trial participants all at once and what could happen if the med did not prove safe or well tolerated. Starting with fewer at a time and collecting data as you go- even though the...
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    vx 661 discussion moved

    Those are all excellent points. I really hadn't thought of the implications of giving a phase 2 med to all the trial participants all at once and what could happen if the med did not prove safe or well tolerated. Starting with fewer at a time and collecting data as you go- even though the...
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    vx 661 discussion moved

    Something I found really surprising- as well as frustrating- was also part of the presentation by our center director the other day. He mentioned that the recruitment process for one of the recent trials took a YEAR and they were only looking for a couple hundred people. Now- I don't think think...
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    vx 661 discussion moved

    Something I found really surprising- as well as frustrating- was also part of the presentation by our center director the other day. He mentioned that the recruitment process for one of the recent trials took a YEAR and they were only looking for a couple hundred people. Now- I don't think think...
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    vx 661 discussion moved

    The current vx 661 trial has just started and is not estimated to be completed till August 2013. The initial 28 day monotherapy w/ 661 is just the beginning. Depending on whatever they are looking for, it will go on to the next part of the trial- 28 more days of cotherapy with Kalydeco. Then of...
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    vx 661 discussion moved

    The current vx 661 trial has just started and is not estimated to be completed till August 2013. The initial 28 day monotherapy w/ 661 is just the beginning. Depending on whatever they are looking for, it will go on to the next part of the trial- 28 more days of cotherapy with Kalydeco. Then of...
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    vx 661 discussion moved

    We had our cf education day at our hospital and a Vertex rep was there. I asked her what, if anything, she could tell us about the combo trials and when we were going to hear official news. She was, predictably, only able to tell us what we all already know; that they will continue forward with...
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    vx 661 discussion moved

    We had our cf education day at our hospital and a Vertex rep was there. I asked her what, if anything, she could tell us about the combo trials and when we were going to hear official news. She was, predictably, only able to tell us what we all already know; that they will continue forward with...
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    vx 661 discussion moved

    Phase 2a of the 809/770 trial showed the limited reduction in sodium chloride levels, etc- that is the press result that resulted in vertex stock dropping, if people remember due to results not meeting expectations. Phase 2b (the phase wrapping up now) involved a longer period on the meds and in...
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    vx 661 discussion moved

    Phase 2a of the 809/770 trial showed the limited reduction in sodium chloride levels, etc- that is the press result that resulted in vertex stock dropping, if people remember due to results not meeting expectations. Phase 2b (the phase wrapping up now) involved a longer period on the meds and in...
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    vx 661 discussion moved

    I agree, mamaScarlett. All the people who have 'sources' telling them that once 2b is done that 809 is being scrapped clearly have sources speaking out of turn- even if they know it's fact, they aren't supposed to be leaking this info prior to the official Vertex press release, and it drives me...
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    vx 661 discussion moved

    I agree, mamaScarlett. All the people who have 'sources' telling them that once 2b is done that 809 is being scrapped clearly have sources speaking out of turn- even if they know it's fact, they aren't supposed to be leaking this info prior to the official Vertex press release, and it drives me...
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    vx 661 discussion moved

    I think you do have to agree not to share info that specific (i.e. fev1). You aren't even told what your numbers are when they are done at clinic. And it does kind of make sense to me, as frustrating as it is (I am just as curious as everyone else!) If everyone is sharing their info it starts...
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    vx 661 discussion moved

    I think you do have to agree not to share info that specific (i.e. fev1). You aren't even told what your numbers are when they are done at clinic. And it does kind of make sense to me, as frustrating as it is (I am just as curious as everyone else!) If everyone is sharing their info it starts...
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    Insights from current 661 or 809 trials

    I just realized there are posts cut off on this thread that for some reason I cannot see- hopefully if someone did link a press release I'll be able to view it the next time I log on! The latest Connections newsletter can be accessed from the home page on the cff.org site by clicking 'Read the...
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    Insights from current 661 or 809 trials

    I just realized there are posts cut off on this thread that for some reason I cannot see- hopefully if someone did link a press release I'll be able to view it the next time I log on! The latest Connections newsletter can be accessed from the home page on the cff.org site by clicking 'Read the...
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    Insights from current 661 or 809 trials

    Was there an actual press release or are you referring to the latest 'Connections' newsletter? The combo trials are referred to there but it's not really any 'breaking news'. It wouldn't make any sense to axe what is being completed now (the 2b trial.) They are so close to being done and it's...
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    Insights from current 661 or 809 trials

    Was there an actual press release or are you referring to the latest 'Connections' newsletter? The combo trials are referred to there but it's not really any 'breaking news'. It wouldn't make any sense to axe what is being completed now (the 2b trial.) They are so close to being done and it's...
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