two weeks on kalydeco!

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cindylou

Guest
Ok, friends, I just wrote up a long blog post about my 2 week experience on Kalydeco so far (I am G551D). For anyone interested in reading the changes I've seen,t he post is here:
http://www.beingcindy.blogspot.com/2012/04/my-kalydeco-two-week-mark.html

My improvements don't seem to be as dramatic as some, but I have DEFINITELY seen changes. Also, my pancreas is almost nonexistant and I absorb fat very poorly, so it wouldn't surprise me if I don't absorb the Kaly quite as well as some with hardier pancreases.
 
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cindylou

Guest
Ok, friends, I just wrote up a long blog post about my 2 week experience on Kalydeco so far (I am G551D). For anyone interested in reading the changes I've seen,t he post is here:
http://www.beingcindy.blogspot.com/2012/04/my-kalydeco-two-week-mark.html

My improvements don't seem to be as dramatic as some, but I have DEFINITELY seen changes. Also, my pancreas is almost nonexistant and I absorb fat very poorly, so it wouldn't surprise me if I don't absorb the Kaly quite as well as some with hardier pancreases.
 
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cindylou

Guest
I just posted my second update! It's not as long and detailed as my first, but I wrote about one of the most exciting improvements I've seen so far - exercise tolerance!

http://www.beingcindy.blogspot.com/2012/04/kalydeco-3-weeks.html
 
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cindylou

Guest
I just posted my second update! It's not as long and detailed as my first, but I wrote about one of the most exciting improvements I've seen so far - exercise tolerance!

http://www.beingcindy.blogspot.com/2012/04/kalydeco-3-weeks.html
 
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cindylou

Guest
I agree completely!!! I think the exercise thing more than anything else has gotten me SO excited. Exercise has ALWAYS been something that I have struggled with greatly and it's exciting to think maybe I can do a little more than I could before!!! I still have to watch myself (my husband wants to hike a local mountain that's an all-day sort of affair, and I told him he gets to find somebody else to be his buddy on that one!) but I'm already noticing a big difference.
 
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cindylou

Guest
I agree completely!!! I think the exercise thing more than anything else has gotten me SO excited. Exercise has ALWAYS been something that I have struggled with greatly and it's exciting to think maybe I can do a little more than I could before!!! I still have to watch myself (my husband wants to hike a local mountain that's an all-day sort of affair, and I told him he gets to find somebody else to be his buddy on that one!) but I'm already noticing a big difference.
 
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BikerEd

Guest
I've been on 32 days, my family, my "close friends" always ask "how's the drug working" I try to tell them its not like taking an asprin for a headache. I work a lot I work hard its part of my need to prove to myself I can do anything I set my mind to. However, in December I couldn't walk 50 yards without a coughing fit that involeded vomiting. Today sprinted 500 yards both ways to get a tool and back, I wasn't short of breath and I didn't puke! Oh I went from a 32 waist to a loose 34 and I'm friggen hungry all the time. Well that's my two cents.
 
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BikerEd

Guest
I've been on 32 days, my family, my "close friends" always ask "how's the drug working" I try to tell them its not like taking an asprin for a headache. I work a lot I work hard its part of my need to prove to myself I can do anything I set my mind to. However, in December I couldn't walk 50 yards without a coughing fit that involeded vomiting. Today sprinted 500 yards both ways to get a tool and back, I wasn't short of breath and I didn't puke! Oh I went from a 32 waist to a loose 34 and I'm friggen hungry all the time. Well that's my two cents.
 
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suziesmom

New member
What I want to know is, does anyone know if Kalydeco will work on any mutation? I have heard that it does but it has only been approved for one specific mutation? ANY info on this would be wonderful. I have only one child, aged 22 with CF. We know that one of her genes is the Delta 508 - the other has never been found. They are working on it now but we still do not know. Thanks everyone.

Sharon
 
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suziesmom

New member
What I want to know is, does anyone know if Kalydeco will work on any mutation? I have heard that it does but it has only been approved for one specific mutation? ANY info on this would be wonderful. I have only one child, aged 22 with CF. We know that one of her genes is the Delta 508 - the other has never been found. They are working on it now but we still do not know. Thanks everyone.

Sharon
 
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forroshis

New member
<div class="FTQUOTE"><begin quote>Information is incorrect and proven to be just so. As the job of the moderator it is our duty to moderate mis-information. This post has been edited for that reason. - Moderator.
For information on the rules you can refer to the code of conduct.

http://www.cysticfibrosis.com/code_of_conduct.cfm</end quote>
 
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forroshis

New member
<div class="FTQUOTE"><begin quote>Information is incorrect and proven to be just so. As the job of the moderator it is our duty to moderate mis-information. This post has been edited for that reason. - Moderator.
For information on the rules you can refer to the code of conduct.

http://www.cysticfibrosis.com/code_of_conduct.cfm</end quote>
 
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cindylou

Guest
The only one that it's been studied in humans on as yet is g551d, so that is the only one they are SURE it will work on. There have been encouraging in-vitro results on other mutations (including a very small percentage of DF508), but results in vitro don't always mean the same as results in human beings.

However, they are working on other drugs right now and hoping to have a drug for DF508 within the next few years, so Sharon, I imagine that something will be available for your daughter soon!

Ed, that is so exciting! I'm glad to hear you're having results too. Like I mentioned in my post, I don't really "feel" a lot different and unlike some I don't feel like I'm breathing easier - but I have noticed a major increase in exercise tolerance along with a much less violent cough. (I still cough frequently, but not to where I feel like I'm going to black out.)
 
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cindylou

Guest
The only one that it's been studied in humans on as yet is g551d, so that is the only one they are SURE it will work on. There have been encouraging in-vitro results on other mutations (including a very small percentage of DF508), but results in vitro don't always mean the same as results in human beings.

However, they are working on other drugs right now and hoping to have a drug for DF508 within the next few years, so Sharon, I imagine that something will be available for your daughter soon!

Ed, that is so exciting! I'm glad to hear you're having results too. Like I mentioned in my post, I don't really "feel" a lot different and unlike some I don't feel like I'm breathing easier - but I have noticed a major increase in exercise tolerance along with a much less violent cough. (I still cough frequently, but not to where I feel like I'm going to black out.)
 
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pencf

Guest
Suziesmom: At our CF ED day, our doctors said that at the conference there was discussion about prescribing Kalydeco to any patient with at least one copy of a class 4 mutation (G551D is a class 4). The ethical discussion went on to say, there is strong evidence to believe that all class 4 mutations have the same basic "type" of defect, and then should react to Kalydeco, however, the big hurdle would be getting Insurance companies to pay for the prescription without the clinical trial results to back it up and approval from FDA for other similar mutations. I know our clinic was going to try to prescribe to other class 4 patients, but haven't heard yet how that has shaken out.
We have double DF508>>>so we are waiting for the BIG PAY DAY for research there!!!
Bethann, Mom of Pat (20) no/CF, and Madeline (almost 17 yrs old), HS Junior, B. cepacia, PA, o2 at night.
 
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pencf

Guest
Suziesmom: At our CF ED day, our doctors said that at the conference there was discussion about prescribing Kalydeco to any patient with at least one copy of a class 4 mutation (G551D is a class 4). The ethical discussion went on to say, there is strong evidence to believe that all class 4 mutations have the same basic "type" of defect, and then should react to Kalydeco, however, the big hurdle would be getting Insurance companies to pay for the prescription without the clinical trial results to back it up and approval from FDA for other similar mutations. I know our clinic was going to try to prescribe to other class 4 patients, but haven't heard yet how that has shaken out.
We have double DF508>>>so we are waiting for the BIG PAY DAY for research there!!!
Bethann, Mom of Pat (20) no/CF, and Madeline (almost 17 yrs old), HS Junior, B. cepacia, PA, o2 at night.
 
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