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I just got a Piko-6. I tested it at clinic last week and it seems to be pretty accurate. Easy to use. Not too expensive. I think it was $80. so far so good.

What is a 1 to N trial? How does one get included in this? Is it possible to be in a 1 to N trial for the VX-809/VX-770 study? How do you apply?

What is the difference between the 2 clinical trails? I know both are for F508 mutations and both VX 661 and VX 809 are effecitve in moving the defect to the surface of the cell to allow VX-770 or Kalyedeco to work. Can anybody shed any light on other differences? which seems to most effective...

I was told trial has been pushed back to May. This is from the Stanford clinic. Anybody heard anything else from any of the other clinics?

that is fantastic. I am curious. Are you still on enzymes? do you still do breathing treatments? How much of your old regiment has been eliminated? do you find that your mucos volume has decreased a lot?. I am so happy for you!

If you were on a previous clinical trial with VX-770/809 combo or you are currently using Kalyedeco, can you share your experiences with the forum. Those of us who are still struggling with this dreadful disease never get tired of hearing stories of the miracle drug that is just around the...

What do you mean you do the apple cider vinegar, lemon and saurkraut? Can you elaborate on this? thanks!

I was tested for every known allergy and nothing turned up positive. I like the lemon idea. thanks.

I have and my lungs reacted very badly to hypertonic Saline. Same with Tobi. Cayston helps some. Never tried mucomyst. I have a little steam machine that helps a little.

I am open for any and all suggestions whether it is food, drink, or medicine. I am 51 and for the last 3 years, my health has really started to deteriorate. I have always been fairly healthy except for the annual or semi-annual exaserbation. In the last 3 years, my body has started producing an...

I credit my lasting this long (51 and counting) to work and exercise. I live for both and i love doing both. I get really down when I can't do either when i am really sick. When I am working ( I am a programmer), I get so involved in it, I stop thinking about how bad I feel. The endorphin rush...

benefits of 809/770 combo drug That is the thing that is the most exciting to me. My FEV1 is in the low to mid 40's. I don't think that will ever increase much because of the significant lung damage I have. But I can live with that if the new drug eliminates or reduces the amount of mucos my...

I have 2 copies of F508 and I am on the waiting list for the Phase 3 clinical trial for the combo drug. My question is does anybody have any knowledge of Kalydeco working at all on people with DDF508? I would take ANY effect. I am having a lot of problems with breathing, mucos, asthma etc. that...

Can anybody tell me how to adjust my profile so I can define my subscriptions? I had it set up the way I wanted getting email notifications for posts on specific forums. Since the new website was introduced, I can't figure out how to set it up and now I am getting posts for topics I have no...

YOU CAN'T BE SERIOUS???? Having a very serious possibly fatal disease is not enough for you to worry about? You are fearful of something created by a fear mongering media? I don't know, but dealing with CF takes up most of the space in my brain for worrying. Focus on what you can control and...

Can anybody tell me how to adjust my profile so I can define my subscriptions? I had it set up the way I wanted getting email notifications for posts on specific forums. Since the new website was introduced, I can't figure out how to set it up and now I am getting posts for topics I have no...

There is absolutely no reason to have a fatalistic attitude about CF. Especially now when they are so close to finding a cure for the disease. The things you have to do to improve your chances of living a long healthy normal life is first of all to have a postive attitude. Attitude is...

Has anybody experienced bad side effects when using the IV antibiotic Meropenem. I am currently using this med to fight an infection and it is really messing me up. It makes me feel like total crap. I experience nausea, runny bowels, throwing up and just overall feeling bad. Anybody else had...

MarciJo, This is the best post I have ever seen. I can't beleive what I just read! You have no CF symptoms? That is amazing!!! You don't have to take enzymes any more? You have no mucous? I can't tell you how excited I am. I am trying to get in on the Phase 3 Kalyedeco/VX 809 trials. How long...

It depends on where you live. I am applying to the one at Stanford. I live in Southern California and this one is the closest to my house. I have been bugging the contact there Colleen Dunn for over a year. She knows my emails. This time when I inquired, she responded and told me what to do...