Vertex 770 question

L

LouLou

New member
Just wanted everyone to know that my son and I are going to be THE video at the NACFC. I have seen the video and I like it very much. I will share it with you after it shows at NACFC. I have been participating in the clinical trial for Vertex 770 since Ph. 2B in 2008. I don't write this often because I no longer share details on the forum due to Vertex's request. I did however share graphic details of my experience in Ph. 2B that may or may not exist on this site anymore. At the time it was against the code of conduct of the site for multiple reasons but since then they allow people to share at their own discretion.
<br />
<br />Through sharing my story and though support by another member; Joanna embarked on getting her children involved with Vertex Ph. 3 in Australia. This is just one example of many on this site of a cross-continental friendship that bloomed into something so much bigger.
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<br />My family and I feel very blessed that I have been able to participate in the trial. I travel 8 hours every 8-12 weeks, leaving my son and husband home in order to participate. I am now on open label. It has been a very rewarding experience & I wholeheartedly encourage others to enroll in clinical trials.
 
K

Kaethe108

Guest
I Found it like this:
on the Website there is an itinery planner. There you can search for keywords and get abstracts of all the presentations.
 
K

Kaethe108

Guest
I Found it like this:
on the Website there is an itinery planner. There you can search for keywords and get abstracts of all the presentations.
 
K

Kaethe108

Guest
I Found it like this:
<br />on the Website there is an itinery planner. There you can search for keywords and get abstracts of all the presentations.
 
D

dasjsmum

New member
Lauren, that's so exciting!! I cant wait to see it (do we get to see it somewhere?).

I do have Lauren and Amy to thank for my kids (ultimately only my son) getting onto the v770 ph3. If it wasnt for them we would not have known about v770 and Lauren's outcomes from the ph2b....I knew we had to get into that trial! I had to track it down here in Aus and find a hospital that was doing it (luckily 2.5hrs drive in Sydney). We were emailing the researchers at the hospital for months begging to be able to participate!! haha I bet they dont get that often!!

My daughter wasnt able to participate because she fell pregnant, and my the 13yr old (now 15) was too afraid of the blood tests (every month or whatever it was), and he blew 92% (fev1 had to be between 40-90). Anyhow, still cant believe that this may be it and the start of everything we all hope for. Im still in denial haha

So....yes, how fantastic is the internet?? How long would it have been before we heard about this drug if not for the internet?? None of the doctors at the kids clinics had even heard about the vertex drugs, and then when I would tell them how well my son was doing they didnt believe me and looked at me like I was a poor silly mother who had no idea and was grasping for straws....humph!!

After the trial ended and I was telling the physio the results she asked me if we knew for sure my son was on the real drug or placebo effect!! I told her that it was pretty hard to placebo a rise in fev1 from 65% - 85% in two weeks and maintain that for a year....honestly, medical professionals can be so patronising sometimes <img src="i/expressions/face-icon-small-sad.gif" border="0">

It is amazing though that many of our specialists are not up on the latest research.....I always assumed they would make it their business to do that, but no...we must be proactive and dont ever expect your doctor to have all the answers.
 
D

dasjsmum

New member
Lauren, that's so exciting!! I cant wait to see it (do we get to see it somewhere?).

I do have Lauren and Amy to thank for my kids (ultimately only my son) getting onto the v770 ph3. If it wasnt for them we would not have known about v770 and Lauren's outcomes from the ph2b....I knew we had to get into that trial! I had to track it down here in Aus and find a hospital that was doing it (luckily 2.5hrs drive in Sydney). We were emailing the researchers at the hospital for months begging to be able to participate!! haha I bet they dont get that often!!

My daughter wasnt able to participate because she fell pregnant, and my the 13yr old (now 15) was too afraid of the blood tests (every month or whatever it was), and he blew 92% (fev1 had to be between 40-90). Anyhow, still cant believe that this may be it and the start of everything we all hope for. Im still in denial haha

So....yes, how fantastic is the internet?? How long would it have been before we heard about this drug if not for the internet?? None of the doctors at the kids clinics had even heard about the vertex drugs, and then when I would tell them how well my son was doing they didnt believe me and looked at me like I was a poor silly mother who had no idea and was grasping for straws....humph!!

After the trial ended and I was telling the physio the results she asked me if we knew for sure my son was on the real drug or placebo effect!! I told her that it was pretty hard to placebo a rise in fev1 from 65% - 85% in two weeks and maintain that for a year....honestly, medical professionals can be so patronising sometimes <img src="i/expressions/face-icon-small-sad.gif" border="0">

It is amazing though that many of our specialists are not up on the latest research.....I always assumed they would make it their business to do that, but no...we must be proactive and dont ever expect your doctor to have all the answers.
 
D

dasjsmum

New member
Lauren, that's so exciting!! I cant wait to see it (do we get to see it somewhere?).
<br />
<br />I do have Lauren and Amy to thank for my kids (ultimately only my son) getting onto the v770 ph3. If it wasnt for them we would not have known about v770 and Lauren's outcomes from the ph2b....I knew we had to get into that trial! I had to track it down here in Aus and find a hospital that was doing it (luckily 2.5hrs drive in Sydney). We were emailing the researchers at the hospital for months begging to be able to participate!! haha I bet they dont get that often!!
<br />
<br />My daughter wasnt able to participate because she fell pregnant, and my the 13yr old (now 15) was too afraid of the blood tests (every month or whatever it was), and he blew 92% (fev1 had to be between 40-90). Anyhow, still cant believe that this may be it and the start of everything we all hope for. Im still in denial haha
<br />
<br />So....yes, how fantastic is the internet?? How long would it have been before we heard about this drug if not for the internet?? None of the doctors at the kids clinics had even heard about the vertex drugs, and then when I would tell them how well my son was doing they didnt believe me and looked at me like I was a poor silly mother who had no idea and was grasping for straws....humph!!
<br />
<br />After the trial ended and I was telling the physio the results she asked me if we knew for sure my son was on the real drug or placebo effect!! I told her that it was pretty hard to placebo a rise in fev1 from 65% - 85% in two weeks and maintain that for a year....honestly, medical professionals can be so patronising sometimes <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />It is amazing though that many of our specialists are not up on the latest research.....I always assumed they would make it their business to do that, but no...we must be proactive and dont ever expect your doctor to have all the answers.
 
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