People on the new drugs: How do you REALLY feel?

Kaethe108 · Oct 20, 2011

If I understood correctly there should be a few people here that are taking part in the different trials and therefore taking Kalydeco, Kayldeko in combination with VX-809 or Ataluren. We read the data and this is of course great news but what interests me most is how you actually really feel since taking the drug? What has changed for you? Did it change your daily life? Your treatment routine? And do you think that with this drugs you will be able to live a somehow "normal life"? I am thankful for every experience that you will share with us! Kaethe ;o)

Kaethe108 · Oct 20, 2011

If I understood correctly there should be a few people here that are taking part in the different trials and therefore taking Kalydeco, Kayldeko in combination with VX-809 or Ataluren. We read the data and this is of course great news but what interests me most is how you actually really feel since taking the drug? What has changed for you? Did it change your daily life? Your treatment routine? And do you think that with this drugs you will be able to live a somehow "normal life"? I am thankful for every experience that you will share with us! Kaethe ;o)

Kaethe108 · Oct 20, 2011

If I understood correctly there should be a few people here that are taking part in the different trials and therefore taking Kalydeco, Kayldeko in combination with VX-809 or Ataluren. We read the data and this is of course great news but what interests me most is how you actually really feel since taking the drug? What has changed for you? Did it change your daily life? Your treatment routine? And do you think that with this drugs you will be able to live a somehow "normal life"? I am thankful for every experience that you will share with us! Kaethe ;o)

Incomudrox · Oct 20, 2011

I'm not on any of them so I can't really comment, however I am interested to hear what people have to say that are.

Incomudrox · Oct 20, 2011

I'm not on any of them so I can't really comment, however I am interested to hear what people have to say that are.

Incomudrox · Oct 20, 2011

I'm not on any of them so I can't really comment, however I am interested to hear what people have to say that are.

BikerEd · Oct 21, 2011

I would be interested as well. However, please be careful with "Normal Life" comments, it can stir some emotions in people. Such as I eat meat, Hell I love it! You're a vegetarian; you don't even know how to cook meat. Am I less normal than you or are you less normal than me? Neither, it's how we live; that is our normal.

That being said, Where in Germany, we lived there for six months when I was a child and I still dream of going back to Nuremburg (I turned the ring).

BikerEd · Oct 21, 2011

I would be interested as well. However, please be careful with "Normal Life" comments, it can stir some emotions in people. Such as I eat meat, Hell I love it! You're a vegetarian; you don't even know how to cook meat. Am I less normal than you or are you less normal than me? Neither, it's how we live; that is our normal.

That being said, Where in Germany, we lived there for six months when I was a child and I still dream of going back to Nuremburg (I turned the ring).

BikerEd · Oct 21, 2011

I would be interested as well. However, please be careful with "Normal Life" comments, it can stir some emotions in people. Such as I eat meat, Hell I love it! You're a vegetarian; you don't even know how to cook meat. Am I less normal than you or are you less normal than me? Neither, it's how we live; that is our normal.
 
 That being said, Where in Germany, we lived there for six months when I was a child and I still dream of going back to Nuremburg (I turned the ring).

sunshine39656 · Oct 21, 2011

I agree about the "normal" remarks. Everyone has different definitions of "normal."

I'm also interested about these new drugs. The people who took them may not can discuss that at this point in time, though?

sunshine39656 · Oct 21, 2011

I agree about the "normal" remarks. Everyone has different definitions of "normal."

I'm also interested about these new drugs. The people who took them may not can discuss that at this point in time, though?

sunshine39656 · Oct 21, 2011

I agree about the "normal" remarks. Everyone has different definitions of "normal."
 
 I'm also interested about these new drugs. The people who took them may not can discuss that at this point in time, though?

missT · Oct 21, 2011

Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that. I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

missT · Oct 21, 2011

Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that. I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

missT · Oct 21, 2011

Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that. I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

Kaethe108 · Oct 21, 2011

Yes, sorry about the "normal". It is a difficult word... I guess I have a pretty normal baby at home, she is sometimes laughing, sometimes crying, drinks her milk 4 to 5 times a day and is wetting her nappies pretty often. At the same time she is not normal... She is extraordinary! Extraordinary pretty, funny, nice and cute!

But still I guess you know what I mean: having medical equipment in the children's room and a cupboard full of medicaments, going to see the hospital every 4 weeks and doing therapy every day is "normally" not part of the live of a four month old child...

So the question that interests me is:
If the new drugs really for example enable the formation of a functioning protein in the cells, then patients should also be able to take less medicaments, cut down or even stop the "breathing therapy" (sorry, I don't know the English word for this), be not vulnerable anymore to certain bacteria etc. etc. etc.

I did not know that people on the trial are not allowed to talk about their personal experience, so I guess nobody can really answer my question...

@Ed:
I live in the very west of Germany at the Saar river. In fact the French border is just a few houses down the road.
I was never on the Nürnberg x-mas market... I guess it would be great! ;o)

Kaethe108 · Oct 21, 2011

Yes, sorry about the "normal". It is a difficult word... I guess I have a pretty normal baby at home, she is sometimes laughing, sometimes crying, drinks her milk 4 to 5 times a day and is wetting her nappies pretty often. At the same time she is not normal... She is extraordinary! Extraordinary pretty, funny, nice and cute!

But still I guess you know what I mean: having medical equipment in the children's room and a cupboard full of medicaments, going to see the hospital every 4 weeks and doing therapy every day is "normally" not part of the live of a four month old child...

So the question that interests me is:
If the new drugs really for example enable the formation of a functioning protein in the cells, then patients should also be able to take less medicaments, cut down or even stop the "breathing therapy" (sorry, I don't know the English word for this), be not vulnerable anymore to certain bacteria etc. etc. etc.

I did not know that people on the trial are not allowed to talk about their personal experience, so I guess nobody can really answer my question...

@Ed:
I live in the very west of Germany at the Saar river. In fact the French border is just a few houses down the road.
I was never on the Nürnberg x-mas market... I guess it would be great! ;o)

Kaethe108 · Oct 21, 2011

Yes, sorry about the "normal". It is a difficult word... I guess I have a pretty normal baby at home, she is sometimes laughing, sometimes crying, drinks her milk 4 to 5 times a day and is wetting her nappies pretty often. At the same time she is not normal... She is extraordinary! Extraordinary pretty, funny, nice and cute!

But still I guess you know what I mean: having medical equipment in the children's room and a cupboard full of medicaments, going to see the hospital every 4 weeks and doing therapy every day is "normally" not part of the live of a four month old child...
 
 So the question that interests me is:
 If the new drugs really for example enable the formation of a functioning protein in the cells, then patients should also be able to take less medicaments, cut down or even stop the "breathing therapy" (sorry, I don't know the English word for this), be not vulnerable anymore to certain bacteria etc. etc. etc.
 
 I did not know that people on the trial are not allowed to talk about their personal experience, so I guess nobody can really answer my question...
 
 @Ed:
 I live in the very west of Germany at the Saar river. In fact the French border is just a few houses down the road.
 I was never on the Nürnberg x-mas market... I guess it would be great! ;o)

missT · Oct 21, 2011

Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would still have all the damage that is already there (our lungs). I am pancreatic sufficient so I am not sure how that would work. I would think that we would still have to do treatments. What is really interesting to me is the children taking the drug. I really dont know if Dr's will start newborns and young children on the drug especially if they are not showing CF disease. I went my whole childhood being like every other kid...it wasnt until my teens that I was diagnosed. Anyway, we are in exciting times!

missT · Oct 21, 2011

Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would still have all the damage that is already there (our lungs). I am pancreatic sufficient so I am not sure how that would work. I would think that we would still have to do treatments. What is really interesting to me is the children taking the drug. I really dont know if Dr's will start newborns and young children on the drug especially if they are not showing CF disease. I went my whole childhood being like every other kid...it wasnt until my teens that I was diagnosed. Anyway, we are in exciting times!

People on the new drugs: How do you REALLY feel?

Kaethe108

Guest

Kaethe108

Guest

Kaethe108

Guest

New member

New member

New member

BikerEd

Guest

BikerEd

Guest

BikerEd

Guest

Member

Member

Member

Member

Member

Member

Kaethe108

Guest

Kaethe108

Guest

Kaethe108

Guest

Member

Member