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VX770
- Thread starter Giggles
- Start date
The D508 drug (VX866) has just completed the second phase of a three phase trial. Hopefully it will be available for submission to the FDA by next summer.
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<br />When approved VX866 will be used in conjunction with VX770 to benefit those of us with DF508.
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<br />Bill
<br />
<br />When approved VX866 will be used in conjunction with VX770 to benefit those of us with DF508.
<br />
<br />Bill
I understand completely Jennifer. My two older brothers & I do not have any of the mutations that the drugs currently effect. I was really excited and moved by the announcement -even though I knew it was in the pipeline. It is a different thing to hear about CF treatments in national news. This is an exciting time for many CF patients. Hopefully those of us outside of the larger group of CF mutations will have a drug soon as well. I am hoping that they will find the VX866 will be effective for other mutations within the same class as D508.
I understand completely Jennifer. My two older brothers & I do not have any of the mutations that the drugs currently effect. I was really excited and moved by the announcement -even though I knew it was in the pipeline. It is a different thing to hear about CF treatments in national news. This is an exciting time for many CF patients. Hopefully those of us outside of the larger group of CF mutations will have a drug soon as well. I am hoping that they will find the VX866 will be effective for other mutations within the same class as D508.
I understand completely Jennifer. My two older brothers & I do not have any of the mutations that the drugs currently effect. I was really excited and moved by the announcement -even though I knew it was in the pipeline. It is a different thing to hear about CF treatments in national news. This is an exciting time for many CF patients. Hopefully those of us outside of the larger group of CF mutations will have a drug soon as well. I am hoping that they will find the VX866 will be effective for other mutations within the same class as D508.
S
Swallowtail66
Guest
Any success in CF research puts the rest of us a step closer. Yeah!!!
S
Swallowtail66
Guest
Any success in CF research puts the rest of us a step closer. Yeah!!!
S
Swallowtail66
Guest
<BR>Any success in CF research puts the rest of us a step closer. Yeah!!!
J
jessykt
Guest
I got excited, then let down, told I didn't have the G551D. Had my nurse double check and then she said I did. I am excited but afraid that there is another mistake and that I don't actually have it, so I am sort of in limbo.
It is truly hard to NOT have bad feelings that you don't have the gene they are addressing, so don't feel bad about that. You are entitled to those feelings! You can be happy for others while grieving for yourself, too.
But any progress they make with one mutation/drug will provide more information for others. It's terribly difficult to think of having to wait, but we are much closer than when I was diagnosed and my parents were told I wouldn't live to be a teenager. Yet, here I am and it's all because things ARE progressing and seem to be moving at a faster rate.
In the meantime, don't beat yourself up because you are disappointed or jealous. You are a human and you have cf, and you are tapped into your "self-preservation," that's all.
It is truly hard to NOT have bad feelings that you don't have the gene they are addressing, so don't feel bad about that. You are entitled to those feelings! You can be happy for others while grieving for yourself, too.
But any progress they make with one mutation/drug will provide more information for others. It's terribly difficult to think of having to wait, but we are much closer than when I was diagnosed and my parents were told I wouldn't live to be a teenager. Yet, here I am and it's all because things ARE progressing and seem to be moving at a faster rate.
In the meantime, don't beat yourself up because you are disappointed or jealous. You are a human and you have cf, and you are tapped into your "self-preservation," that's all.
J
jessykt
Guest
I got excited, then let down, told I didn't have the G551D. Had my nurse double check and then she said I did. I am excited but afraid that there is another mistake and that I don't actually have it, so I am sort of in limbo.
It is truly hard to NOT have bad feelings that you don't have the gene they are addressing, so don't feel bad about that. You are entitled to those feelings! You can be happy for others while grieving for yourself, too.
But any progress they make with one mutation/drug will provide more information for others. It's terribly difficult to think of having to wait, but we are much closer than when I was diagnosed and my parents were told I wouldn't live to be a teenager. Yet, here I am and it's all because things ARE progressing and seem to be moving at a faster rate.
In the meantime, don't beat yourself up because you are disappointed or jealous. You are a human and you have cf, and you are tapped into your "self-preservation," that's all.
It is truly hard to NOT have bad feelings that you don't have the gene they are addressing, so don't feel bad about that. You are entitled to those feelings! You can be happy for others while grieving for yourself, too.
But any progress they make with one mutation/drug will provide more information for others. It's terribly difficult to think of having to wait, but we are much closer than when I was diagnosed and my parents were told I wouldn't live to be a teenager. Yet, here I am and it's all because things ARE progressing and seem to be moving at a faster rate.
In the meantime, don't beat yourself up because you are disappointed or jealous. You are a human and you have cf, and you are tapped into your "self-preservation," that's all.