CAD106 and CNP520

[Julie G]

Thank you, NF52, for your post. As she mentioned, the 4 of us here in the Generations Study have become close and supportive friends. We have met and have a wonderful bond. These 3 women are very intelligent, have had amazing careers, and are kind.

Love this! I'm thrilled that you've all connected through the forum and continue to support one another. I suspect that I speak for many in expressing my gratitude to you all for taking part in this important research. Please keep us updated on your progress.

[lol]

Yes, Julie G, it is a great to have found supportive friends in the Generation Study. The main purpose for my post, however, is to get across that Big Pharma can be a good thing.

[Wendy3/4]

I am a Generation 2 trial participant taking oral CNP520/placebo daily for 2 weeks. Anyone else in the "same boat" interested in interacting?

[NF52]

I am a Generation 2 trial participant taking oral CNP520/placebo daily for 2 weeks. Anyone else in the "same boat" interested in interacting?

Welcome Wendy!

I am in a slightly different boat, taking either CNP520 (50 mg) or a placebo daily in the Generations 1 trial, for those with ApoE 4/4. Welcome to a group of people who know just how noisy an MRI machine can get--and who are committed to spending some of the next 5 years helping to advance the science towards not only an effective preventative drug, but a whole host of possible biomarkers (blood, PET and MRI scans) , cognitive tests and food surveys that may help to light a path for others.

The Generations 2 study is testing two different doses of CNP 520 (50 mg. first and then 10 mg.) for people with both ApoE 3/4 and 4/4. I assume that you're in the 50mg/placebo group, with about a 68% chance of taking the real drug and a 32% chance of taking the placebo. (I like those odds--much better than Powerball!)

I'm guessing that it's only been two weeks since your "baseline" day. Hope you felt like I did that it was great to finally get "in the boat", although the 90-day screening process ensures that people have had lots of support in deciding if this is the right move for them. There are several people on this site who are in Generations 1 or 2, ranging from pretty recently to almost 2 years. I know of no one who has had to drop out due to side effects, and have personally found that the staff on my site are helpful, deeply appreciative of my time, supportive of changes I've made to supplements, and understand the need for occasional medical procedures.

You will find the ApoE4.Info members are open, wise, eager to share and always ready to help others in their search for answers. I hope you'll explore a bit and jump into any conversations you like, as well as share your perception of the Generations Study experience.

If you'd like to ask more questions privately, feel free to send me a Private Message. (And no, I don't let anybody know what's on the tests. ) I'm sure the same is true for all the other folks who have publicly said they are in the Generations Program: "lol", "mardi", "p45va" "lindy" and "johndoealzh". "John" is the only one in Generations 2; the others are in Generations 1.

Hugs from a fellow traveler on the boat!

[Wendy3/4]

Thank you for the "welcome" info NF52. I read the thread and appreciate that others are also experiencing the trial journey.
My bottle says 50mg/15mg/placebo on it. I am experiencing a consistent possible side effect but not sure if we are supposed to discuss that...will wait for your guidance.
Otherwise when I feel down about AD (I buried my mom a year ago after caring for her for a decade with AD), I take comfort by re reading the nun study results. As you all may know, one nun in particular was deemed "not demented" but her post mortem exam did indeed show extensive plaques and tangles just like many others who were afflicted. Presumably her good health and curious intellect allowed her brain to compensate and function.
I think that those who research trial options are also "curious" and can do the same!

[Lucy5]

Wendy wrote:I am a Generation 2 trial participant taking oral CNP520/placebo daily for 2 weeks. Anyone else in the "same boat" interested in interacting?

Welcome to our community, Wendy!

I see that our NF52, as a participant in the Generations 1 trial, has reached out to you and shared some of her very positive experiences to date as well as a list of members who have also identified themselves as Generations participants. I know you'll find lots of support here!

As a study participant, you may already be well informed about this ApoE4 gene of ours. In any case, I believe you'll also find our site Primer written by Stavia, a practicing physician, an excellent source of material for you along the way. Additionally, our Wiki offers a variety of in-depth discussions of interest to our members, including a How-To-Guide providing useful tips on how to navigate our site more easily and efficiently.

While writing this I just saw your most recent post. I am so very sorry to hear about your Mom. I can tell you that there are many here who understand so well what you and your family have been through. It's a wonderful and selfless thing you are doing; committing yourself to this study in the hope of finding an answer for all of us!

Wendy, please don't hesitate to ask questions of the group at any time. We are a community with shared focus and purpose and we're here for you!
warmly, Lucy

[srbogert]

Welcome to the group Wendy3/4! I see that you have already been welcomed by NF52 and Lucy 5, two top members of the support team. I just want to reinforce some of the points that they made.

First: We try to be a very supportive community and we welcome your input and contributions. I'm sure that losing you Mom to AD was devastating, but here you will find many who have had similar experience. Together we can support each other and look forward to new and better outcomes in the future. The Generations research that you are participating in is one step toward making the future better. I liked your observation:

Presumably her good health and curious intellect allowed her brain to compensate and function.
I think that those who research trial options are also "curious" and can do the same!

As a new member, I want to encourage you to read the Primer by Stavia. It really is a great summary of the issues around APOE4, and what you can do about them. You should also review the How To guide. It will help you navigate the site, search more effectively, and make better posts. Please, keep posting and participating.

[NF52]

My bottle says 50mg/15mg/placebo on it. I am experiencing a consistent possible side effect but not sure if we are supposed to discuss that...will wait for your guidance.
Otherwise when I feel down about AD (I buried my mom a year ago after caring for her for a decade with AD), I take comfort by re reading the nun study results. As you all may know, one nun in particular was deemed "not demented" but her post mortem exam did indeed show extensive plaques and tangles just like many others who were afflicted. Presumably her good health and curious intellect allowed her brain to compensate and function.
I think that those who research trial options are also "curious" and can do the same!

Hello again Wendy!
Thanks for the info on your pill bottle. Those clever people at Novartis have obviously combined steps (which isn't clear from the clinical trials.gov site) to randomize both doses against a placebo. So you are on either a 50mg capsule of a BACE-1 inhibitor (the same dosage as the CNP520 "arm" of Generations 1) or a 15 mg dose of CNP520 or a placebo. Your consent form probably says what the odds are of having either dose or the placebo. My assumption (solely from Generations 1 and what I've read) is that you still have about a 68% chance of being on one of the two real pills. My understanding is that the 15 mg pill, if effective, might eventually be an option for younger people with ApoE 4 who show early signs of amyloid deposits.

As for the "consistent possible side effect", I would recommend calling or emailing the Nurse Practitioner or Study Doctor who you dealt with directly when they took your medical history. At every visit I am given "discharge instructions" with the names, positions, emails and phone numbers of all the key people. If you don't have a sheet like that, you probably have emails from the Study Coordinator and Nurse Practitioner and could contact either one to say you'd like to share information on a possible side effect.

I'm sure they'll get back to you quickly, and they do want to know about any changes in health. When I reported at a visit last March that I had been on an inhaler, steroid medication and prescription cough medicine for a prolonged bout of bronchitis in January (not a new thing for me), the NP gently reminded me that they really like to know before, or soon after, I start on medications, since some might have an interaction if I'm on CNP520. Oops!

Wendy, like you I was very close to my mother, who died 10 years ago with moderate AD. She once said "I think it would be so fascinating if they could open up my brain; I think it would look like a plate of spaghetti, all tangled up!" Smart lady, who had never read about amyloid plaques and tau tangles! I think both of our mothers would be thrilled that we're being proactive in lots of ways to "open up our brains" and help ourselves and others.

[Wendy3/4]

So happy for advice and links to read from all.
My daughter has dubbed me a "nerd" for my penchant to research and read topics of interest ad nauseam. She was SO certain that I had "nothing to worry about" (after I became obsessed with AD due to my mother's decline) that she bought me the 23andme medical tests to alleviate my fears a year ago. The results showed a copy of APOE4 which launched me into "proactive mode" which led me to find the Generations trial. Happy to find others who did likewise. I feel that BACE inhibitors for AD may be like statins for CAD...just need to figure out optimal dose, when to begin the therapy, initial clearing with immunotherapy ect...
Exciting times! Happy to be a part of it.

[Lindy]

I am a Generation 2 trial participant taking oral CNP520/placebo daily for 2 weeks. Anyone else in the "same boat" interested in interacting?

Hi Wendy! So happy to have another curious mind on the list. I'm the "lindy" NF52 mentioned and I'm happy to welcome you aboard the CNP520 flotilla (I'm in the Generation 1 boat). I appreciate your take on the nun study - I think all of us believe that our lifestyle choices (healthy food, exercise, judicious use of supplements, rewarding social life) and positive mental attitudes can make a difference, regardless of our genetics. We are fortunate that we have so much more knowledge today about how this all fits together than previous generations have had. And I'm confident the trials we're in will add more knowledge that will benefit future generations.

Please feel free to message me any time if you'd like to chat.