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jellytot
03-25-2012, 01:21 PM
Hi, I'm waiting to get Kalydeco (I'm a g551d), and my fev1 is around 70-75% when well (clear). I still have to do a lot of treatment to maintain it though and I get put on IVs a lot. I'm worried that my lungs are too damaged to benefit significantly from the new drug (my fev1 used to be 96% about seven or eight years ago). Is there anyone with a similar lf to mine that's on Kalydeco now and what has it been like for you? I'm hoping for big changes, but maybe it's too late for me, and my lungs are too damaged?

jellytot
03-25-2012, 01:21 PM
Hi, I'm waiting to get Kalydeco (I'm a g551d), and my fev1 is around 70-75% when well (clear). I still have to do a lot of treatment to maintain it though and I get put on IVs a lot. I'm worried that my lungs are too damaged to benefit significantly from the new drug (my fev1 used to be 96% about seven or eight years ago). Is there anyone with a similar lf to mine that's on Kalydeco now and what has it been like for you? I'm hoping for big changes, but maybe it's too late for me, and my lungs are too damaged?

Incomudrox
03-25-2012, 01:52 PM
While no one can tell you how much of a gain you will or will not see. It will surely keep you from declining as much. If it can bring you back to the 1-2% a year drop you should live a long long time if that's what you're worried about. Maintaining what you do have now is going to be what kalydeco was made for. I don't know how old you are but 70% is a very good number to have. That being said get on Kalydeco exercise eat right and you should see that number go up over time if you don't see an immediate jump. Your biggest gains will probably be seen in your small airways which are much more important to living a long life without shortness of breath and need for oxygen however they do contribute to the overall numbers and somewhat to FEV1. To put it in perspective for you my FEV1 is 31% and has been lower for the past 1 1/2 years. I'm not taking Kalydeco and don't know if I can.

Incomudrox
03-25-2012, 01:52 PM
While no one can tell you how much of a gain you will or will not see. It will surely keep you from declining as much. If it can bring you back to the 1-2% a year drop you should live a long long time if that's what you're worried about. Maintaining what you do have now is going to be what kalydeco was made for. I don't know how old you are but 70% is a very good number to have. That being said get on Kalydeco exercise eat right and you should see that number go up over time if you don't see an immediate jump. Your biggest gains will probably be seen in your small airways which are much more important to living a long life without shortness of breath and need for oxygen however they do contribute to the overall numbers and somewhat to FEV1. To put it in perspective for you my FEV1 is 31% and has been lower for the past 1 1/2 years. I'm not taking Kalydeco and don't know if I can.

saveferris2009
03-25-2012, 04:08 PM
The Kaly Phase III study (STRIVE) involved patients with "Baseline lung function in STRIVE was 63.5 percent predicted for patients in the KALYDECO treatment group and 63.7 percent predicted among those in the placebo control group."

So Jelly I don't see why Kaly wouldn't work for you.

saveferris2009
03-25-2012, 04:08 PM
The Kaly Phase III study (STRIVE) involved patients with "Baseline lung function in STRIVE was 63.5 percent predicted for patients in the KALYDECO treatment group and 63.7 percent predicted among those in the placebo control group."

So Jelly I don't see why Kaly wouldn't work for you.

jellytot
03-25-2012, 04:44 PM
Thanks for the reply. I know 70% is good compared to 30%, sure, but I had been hoping that Kalydeco would mean that I'd be able to stop most (all?) of my treatments (as well as stabilize me) because at the moment, my routine is exhausting, it takes up so much of my time and I miss my freedom. I'm not really worried about dying. Which numbers - fev1/fvc signify small airway status, do you know? I imagine mine can't be in very good nick, because I've lost so much lf over the last decade. ....I've just had a read of your blog... interesting stuff! You went a year without IVs/inhaled antibiotics? I've had approximately 4 courses of IVs since Christmas! I've got a lot of respect for you... it seems like you cope with it mentally much better than I do, and you seem to have taken a lot of control over your health (maybe that's why you cope better mentally). It's my independence that I miss the most. I think I've read about Haritaki before - it's amazing. In my opinion, CF and cf care is actually really, really simple, and there are so many potential ways of treating it (and the bacterias we culture); it's just a shame that the way the pharmaceutical system works mean that it takes so long and so much money to get each new medicine to market. Interesting post on sleeplessness too - I get it a lot. I try meditation, relaxation music, the works... I think I have very, very sensitive hearing,... I'm thinking of investing in some decent headphones that will block out more external noise, because literally, a car drives down my street - and I'm awake again. I'm going to begin tai chi training next week. It's supposed to be excellent for us - more beneficial than regular exercise. What exercise do you do? What kind of chest clearance? Good luck on reaching your goal. I think you'll do it.

jellytot
03-25-2012, 04:44 PM
Thanks for the reply. I know 70% is good compared to 30%, sure, but I had been hoping that Kalydeco would mean that I'd be able to stop most (all?) of my treatments (as well as stabilize me) because at the moment, my routine is exhausting, it takes up so much of my time and I miss my freedom. I'm not really worried about dying. Which numbers - fev1/fvc signify small airway status, do you know? I imagine mine can't be in very good nick, because I've lost so much lf over the last decade. ....I've just had a read of your blog... interesting stuff! You went a year without IVs/inhaled antibiotics? I've had approximately 4 courses of IVs since Christmas! I've got a lot of respect for you... it seems like you cope with it mentally much better than I do, and you seem to have taken a lot of control over your health (maybe that's why you cope better mentally). It's my independence that I miss the most. I think I've read about Haritaki before - it's amazing. In my opinion, CF and cf care is actually really, really simple, and there are so many potential ways of treating it (and the bacterias we culture); it's just a shame that the way the pharmaceutical system works mean that it takes so long and so much money to get each new medicine to market. Interesting post on sleeplessness too - I get it a lot. I try meditation, relaxation music, the works... I think I have very, very sensitive hearing,... I'm thinking of investing in some decent headphones that will block out more external noise, because literally, a car drives down my street - and I'm awake again. I'm going to begin tai chi training next week. It's supposed to be excellent for us - more beneficial than regular exercise. What exercise do you do? What kind of chest clearance? Good luck on reaching your goal. I think you'll do it.

jellytot
03-25-2012, 04:50 PM
Ferris - thanks. The waiting and the uncertainty is super hard, though. I'm in England, and we don't know yet when it will be made available here. Hopefully within the next few months.

jellytot
03-25-2012, 04:50 PM
Ferris - thanks. The waiting and the uncertainty is super hard, though. I'm in England, and we don't know yet when it will be made available here. Hopefully within the next few months.

Incomudrox
03-25-2012, 07:01 PM
I have to agree right now I spend a lot more time than I like doing treatments. I always say it could be worse! In any event - your FEF 25-75% is generally looked at as small airway function. Luckily I haven't had much trouble sleeping as of late I started taking cyproheptadine as an appitite stimulant and take it at bed, it works well enough to make me tired because of the antihistamine who woulf have thought it was that simple. as far as exercise I mostly do weight lifting and some cardio not much. Not because I cant but because its not proven to increase PFT's anymore than anything else. HIT is what rehab centers use and doesn't have much cardio but more lifting. I use the vest twice a day. If you venture into the adults section you will see towards the bottom I have a PFT's goals thread. I have everything I do listed in there. I hope this answered some of your questions.

Incomudrox
03-25-2012, 07:01 PM
I have to agree right now I spend a lot more time than I like doing treatments. I always say it could be worse! In any event - your FEF 25-75% is generally looked at as small airway function. Luckily I haven't had much trouble sleeping as of late I started taking cyproheptadine as an appitite stimulant and take it at bed, it works well enough to make me tired because of the antihistamine who woulf have thought it was that simple. as far as exercise I mostly do weight lifting and some cardio not much. Not because I cant but because its not proven to increase PFT's anymore than anything else. HIT is what rehab centers use and doesn't have much cardio but more lifting. I use the vest twice a day. If you venture into the adults section you will see towards the bottom I have a PFT's goals thread. I have everything I do listed in there. I hope this answered some of your questions.