CAD106 and CNP520

[Kenny4/4]

Thank you for participating in the research!

[RossGH]

Just thought I would I would post and advise that I am in the Generations 2 study in Dallas TX as of mid January 2019. I am a retired engineer, age 67. Apoe 3/4. Ross

[NF52]

Just thought I would I would post and advise that I am in the Generations 2 study in Dallas TX as of mid January 2019. I am a retired engineer, age 67. Apoe 3/4. Ross

Thanks for posting your news, Ross!

I went back and found your first post about your unfortunate experience with being told that you had two, not one copy of ApoE 4. Your site is Dallas must have done a great job of showing you that they were trustworthy after that, and I hope you enjoyed actually getting started! I'm assuming that mid-January was the start of taking either CNP520 or a placebo, which is what I have been doing for 18 months in the Generations 1 trial, with no ill effects so far. I hope the screening process wasn't too burdensome. It gets easier as you go along. After the first year, it gets a little easier, with two of the four annual appointments fairly brief check-ups. We have at least 8 or so forum members who are in Generations 1 or 2, so we are a significant part of the 1000 or so people they hope to recruit.

As a retired engineer, I hope you have plenty of time now to "tinker" on those projects all engineers have in their garages, basements, computers, or heads! Feel free to share more of your experience with the study, or with what you have changed, if anything, since your 2015 news.

[IrishGal]

has anyone been stopped by TSA when traveling with the CNP520 pill bottle?

[NF52]

has anyone been stopped by TSA when traveling with the CNP520 pill bottle?

Hi IrishGal,
I’ve taken several flights with CNP520/placebo and no one has ever asked about it. If they did, it is clearly marked as an investigational drug and I doubt illegal drugs have the user’s initials, the doctor’s name, and the usage dates conveniently marked on each bottle! I confess I had the same concern you have the first time I did it, however!

I’m at week 91 (about 21 months) into the 5-year trial on Generations 1. Hope you’re finding it a worthwhile endeavor, since whatever the results, it will provide a rich source of APOE 4 data for years to come. We have about 10 members who are currently in Generations 1 or 2, in sites across the country. As someone whose ancestry is half Scottish/English and married someone who is about 75% Irish-American, I feel a kinship with anyone whose ancestors hailed from that area (and loved the two trips I've been lucky enough to take to Ireland.)

We hope you'll find it worthwhile also to browse this forum; I know I continue to learn from the experiences and expertise of others, and to value the support given to all members. A handy way to find shortcuts to using the icons next to your user name, and the quotation mark in the upper corner of each post (so that the person quoted gets notified of your reply) is the How-To section of our Wiki.

[SamNZ]

has anyone been stopped by TSA when traveling with the CNP520 pill bottle?

Welcome to our site IrishGal, I am not sure how long you have been following us for but hope you have found our Primer which has a wealth of information for people with the Apoe4 gene. I hope you find the answers to your question, I see NF52 has not had an issue traveling. Bon Voyage anyway and once again welcome to our site, I hope you can find some new friends and learn some new information whilst you are here. Cheers SamNZ.

[IrishGal]

I was curious because I am traveling with folks who don't know I am in the study and don't want to explain. I suppose the counting cap with just look like many other things going through TSA. I was once stopped for an inhaler...

[NF52]

I was curious because I am traveling with folks who don't know I am in the study and don't want to explain. I suppose the counting cap with just look like many other things going through TSA. I was once stopped for an inhaler...

I think the TSA is probably used to people ages 60-75 (the ages of the participants in the Generations studies) having pill bottles in their luggage. As for your friends noticing it, I think a variation on the classic Ms. Manners comment that lets the questioner know you don't feel the need to answer private questions is fine: "I've found that medical information is best kept between patients and doctors, but I guarantee I'm up for this trip!" As SamNZ said, Bon Voyage!

If you're someplace with high temps, try to keep the pills in the air-conditioned hotel room while you're out and about. I was told to keep them at less than 77 degrees Fahrenheit if possible. Don't worry too much though--it's a 5-year study, so a few warm pills won't make a huge difference!

[IrishGal]

Thanks. It's an older relative who worries a LOT and would worry if there was anything medical going on with me. Her family and I decided not to tell her about my gene 3/4 or that I am even in a study. I do want to carry it on with all my meds, so here's hoping for the best! Thanks for the info about temps, always good to know.

[NF52]

Thanks. It's an older relative who worries a LOT and would worry if there was anything medical going on with me. Her family and I decided not to tell her about my gene 3/4 or that I am even in a study. I do want to carry it on with all my meds, so here's hoping for the best! Thanks for the info about temps, always good to know.

There's a special dispensation for "little white lies" for older relatives who worry about us "young ones" So if she gets nosy, you could say something like "Oh that's just a special pill for healthy people my age that my doctor is trying out." That way she can't ask for some!