Monday, June 3, 2013

Kalydeco: Day 2

The same.

I think I'm over analyzing and reading too much into every sniffle and every cough! I just wish there was a clear sign that it's working. Sigh.

The only thing I noticed today is that I had been blowing my nose a lot more this afternoon and (TMI alert) it's been thick and greenish. Yuck. I also feel myself clearing my throat during the day and every time I wind up with some mucus in my mouth.

I don't want to 100% say this is from Kalydeco. This is my allergy season and my daughter has a cold and is full of snot herself. That combination could definitely be the cause of my symptoms.
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4 comments:

  1. cindy baldwinJune 3, 2013 at 10:02 PM

    I didn't have immediate effects from Kalydeco either - the biggest effect I had was feeling sick. But I also think I have less CFTR function than you based on the things you describe (I am suuuuuuper PI and have always had a very difficult time bringing anything up). If you're interested, I kept a mostly detailed journal of my first week:

    http://beingcindy.blogspot.com/2012/04/my-kalydeco-two-week-mark.html

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  2. JohnJune 3, 2013 at 11:59 PM

    Hi Karen! I am so glad you are back to the blogging world, WELCOME BACK!!! I have been following your blog for a long time now. Before you even ran your marathon, which was amazing. So you are beyond lucky to receive Kaldeco off label. I have been following Kalydeco for a while now and I have some info for you. Some of this you may already know. I have seen it takes about 2 weeks for people to adjust to Kalydeco. They get the sniffles and a cough and all that stuff. Then for whatever reason it starts working.

    I wanted to share something that I think maybe you should consider doing. There is a clinical study being performed on Kalydeco in individuals who have at least one copy of DF508 and what is called residual CFTR function. Your one rare gene is consider to have residual CFTR function. This is why you are pancreatic sufficient. In fact I have a copy of DF508 and a copy of 3849 10kb c t (this is a residual CFTR function like yours). Anyway Vertex believes Kalydec will improve "our" CFTR function. In fact the study that they are conducting actually is showing this. I belong to a facebook group that is following this study in Denver. There are people in the study or who have received Kalydeco off label and are seeing increased PFTs lower sweat tests and even weight gain.

    I think you should consider joining the study because there are only a handful of us out there who qualify. The more information we get on Kalydeco the more likely it will be approved for other mutations by the FDA. Here is the link. In fact Vertex pays to fly you out to Denver. I can give you more info if you would like! I look forward to talking to you Karen! Again welcome back :)


    http://www.clinicaltrials.gov/ct2/show/NCT01685801?term=ivacaftor&rank=16

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    Replies
    1. KarenJune 4, 2013 at 10:12 AM

      John, I did see that clinical trail when I was doing my research on Kalydeco. Someone in the "Praying for Success' group on FB had sent it to me along with other documents that show K *should* improve my CF. Just by reading that I thought it enrolled in Sept 2012 and is ending Sept 2013 so I didn't look into it further.
      I will look into it further this week and try to call someone to talk about it. Please send me the information. I'd like to help if I can

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    2. JohnJune 4, 2013 at 11:37 PM

      Well I have some more information for you. Here is who you need to contact if you are interested in helping with the study in Denver. The lady you need to contact is named Connie St. Clair. She is the nurse who is running the trial. Here is her email stclairC@njhealth.org

      The study is still enrolling and recruitng. It is a quick trial so you could still enroll if you would like. I was told in the FB group I belong to that they are still accepting new patients. As you know there are not many of us :)

      Also, I spoke with someone who is enrolled in the study and she told me if anyone is enrolled in the initial clinical trial you can be eligible for a 2 year Kalydeco study! That is pretty AMAZING receiving Kalydeco for 2 years!

      So looks like it may be of interest to you if you are paying for all this Kalydeco on your own. How much are you paying if you do not mind me asking?

      If you have any more questions please let me know. I hope to hear from you soon Karen!

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