CAD106 and CNP520

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lol
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Re: CAD106 and CNP520

Post by lol »

I would like to know if either of you will be taking the CNP520, given in pill form (or placebo, of course), NF52 and Mardi. I will not have this option. Guess they are comparing the 2 drugs to placebos and to each other.

Another thing I don't get. How are they going to get many participants for this Generation Study? We have to be 4/4, specific age group, and then pass out on a multitude of physical and mental tests. We have to be willing to put our plans on hold so that we can make the trip for all that the study entails - blood draws, shots, testing. We are also committing to years of this. It is a world wide study and Gene Match will help with the finding of 4/4s, but still seems like a huge task.

One possible side effect of CAD106 could be the declining of cognitive skills. After 2 shots, my partner and I have won a bridge tournament and my Lumosity scores have spiked up. Both could be from just lots of practice, but at least I am not going downhill. :)
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SusanJ
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Re: CAD106 and CNP520

Post by SusanJ »

lol, thanks for sharing your thoughts. It does seem like a big time commitment, but then I look at the number of hours I put in at the local museum, and it's all relative.

Glad to hear you spanked the competition at your bridge tournament!
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Re: CAD106 and CNP520

Post by NF52 »

Hi lol,
I won't know until I pass next week's tests and move onto the actual study (Phase II as they call it), whether I'll get the vaccine protocol (CAD106 or placebo) or the BACE inhibitor daily pill (CNP520 or placebo). It sounded to me like they're just starting up the pill "arm" of the trial when I was in for the first visit last week. As for the time commitment, I am assuming there will be some flexibility (at least of a few days either way) on the "every 7 weeks" during the first year. After that, it's quarterly, which should be a little easier.
As an aside, SusanJ, I do agree that time commitments are all relative (which is why the time my husband and I spend babysitting our grandchildren flies by and the time in the dentist chair does not). But I think what lol is also referring to is significant. This study has a detailed disclosure so that, while you can drop out at any time, and will be dropped if it becomes obvious the study could affect your health, you know you are committing to:
a minimum of 5 years, possibly extended to 8 years; nine visits the first year, some of them only one or two weeks apart; blood samples (15ml) taken at the screening visit and 12 ml taken every 6 months after that, with a maximum mandatory sample of 32 ml (approx. 6-7 teaspoons per the informed consent disclosure); a total of 7-10 MRIs during the 5-8 years (including 3 the first year); an amyloid PET scan before the first treatment and and the end of 2 years (both of which will take approximately 2.5 hrs).
They are hoping we agree to the additional "voluntary" scans: an amyloid PET scan at year 5; an FDG PET scan before the first treatment and at the end of year 2 (these require fasting for 4 hours); a functional connectivity MRI (fMRI) which takes about 45 minutes, and a cerebrospinal fluid sample before the first treatment, at end of year 2 and year 5.

The total radiation of mandatory and voluntary scans, which I'm up for, is listed as equivalent to 13 years of regular background radiation. [I'm in for all but the spinal taps--had 2 epidurals and that's enough.]

In addition you need a study partner who agrees to come to a few visits a year for about 90 minutes of questions to corroborate your status and answers.

So I too hope they will find enough people who are able and willing to do this. And send a thanks to all those in studies like the Olmstead, MN study that have given us the info we have so far on ApoE4.
4/4 and still an optimist!
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Re: CAD106 and CNP520

Post by lol »

You make perfect sense, NF52. The worst for me is the drive in to Philadelphia - so much traffic and weaving in and out of lanes. Never know how long the trip will be. Plus, hate to admit it, I get kind of nervous going in. Then the parking can also be a problem. My husband insists on driving and he still works. He is a good guy. Didn't luck out with some of my genes, but I sure lucked out with him.

You will be offered the choice to participate, NF52, and you will be an asset. I did appreciate that I wasn't pushed into the Generation Study with false promises. They just said, "It might not help you, but it might. We think that it is safe, and you will be closely monitored." Fair.

Thank you for volunteering at the museum, Susan. I used to love going to the Philadelphia Museum of Art. Nowadays, it is The Please Touch Museum with my grandchildren. Like NF52, my happiest times are with them. They are my precious ones.

Just got a good laugh. I re-read one of my posts, specifically to see how many cognitive errors I had made. I called amyloid plaque the amyloid plague. I guess that is how I subconsciously think of it - the plague.

Let's enjoy the good times! :)
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Re: CAD106 and CNP520

Post by NF52 »

"Amyloid Plague" is perfect, lol! My husband always liked how our youngest son pronounced the title of the 1990's cartoon TV show, "Batman, the Animated Series" as "Batman, the Amylated Series". He figures we are now fighting "The Amylated Plaques".
4/4 and still an optimist!
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Re: CAD106 and CNP520

Post by lol »

You are so funny, NF52, and I needed to laugh. Thanks! Xoxox
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Re: CAD106 and CNP520

Post by Mardi »

Here is some information posted by another contributor of the form. Hope it is OK to copy here. It mentions BACE1 class of drugs

From the forum "Science and Research forum" "Verubecestat failed"

Information about BACE1 drugs Posted by J 11 2-17-17: "I just searched for BACE1 and there was viewtopic.php?f=16&t=2728&hilit=BACE1 ,"

CNP520 is a BACE1 drug that is the cohort 2 in this study so I am hopeful.

------------------

Both of you have a great sense of humor, which I really enjoy... especially "amyloid plague".

I too worry about the traveling to participate in this study. I travel 130 miles one way to get there. Fortunately my husband is able to go with me. The 4 1/2 - 5 hour round trip would be a bit much for just one person. I'm sure we can do it now.... but what about in a couple of years?

My MRI showed nothing that would prevent continuation in the study and the PET scan does not prevent participation regardless of what it shows. It is just a benchmark for the study to compare to.

Went for my first appointment after being accepted. Went through a depression screening and then was told they would randomize my selection into the trial and they randomize if I get the actual pill or placebo. I was put on the pill form so CNP520. There is a 60% chance you will get the actual medicine in pill form, instead of the placebo. The side effects can include pigmentation changes, so they have to photograph you front and back, head to toe in your underwear. So be prepared to take a standing swimsuit type photo of front and back (got to wear dark sunglasses, so hopefully not easily recognized). As I was doing it my mothers words kept going through my head.... "Always wear clean underwear with no holes in case you are in an accident". So be prepared!

As I understand it... I go back every 13 weeks for bloodwork, memory tests, etc. and to get more pills. They gave me bottles of the medicine and had me take the first one in front of them. Guess you can't just have the doctor call up the local CVS to renew. Before my 26th week apt, I will have to have another MRI.

So onward down the "yellow brick road" At the end of the trial will I meet "The Wicked Witch of the West" or "Glinda the Good Witch"? Only time will tell. But like Dorothy I have to follow the road.

Best wishes to lol and NF52 as you go down your journey!! ;)
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Re: CAD106 and CNP520

Post by lol »

I am glad you are getting the CNP520 pill form, Mardi. I would have preferred this, especially after reading J11's posts about BACE1. Glad you wore clean underwear for your photo shoot. Just don't let them sell your pics to Sports Illustrated Swim Suit Edition!
Keep us posted! xo
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Re: CAD106 and CNP520

Post by NF52 »

Hi lol and Mardi,
Just went through the second Generations Study appt. 2/23 with my study partner, aka husband. We both passed the memory part, and I was relieved to hear that my EKG continues to be "completely normal", since my dad died of heart disease at 67. As expected, I found the story memory easiest, the numbers and words OK, and the drawing an "uh-oh" moment.
But overall, I thought "well, at least this is a pretty good baseline". (Can you tell I'm competitive on tests?) At the end of the afternoon, the study coordinator was scheduling the next four days. March is going to be a busy month: March 10: MRI and blood/urine tests- they ran out of time to process them (!). March 24: Amyloid PET, March 31: FDG PET. Finally April 3 for first injection day, since unless they get the OK to start the CNP520 arm, I'll be assigned to the CAD106/placebo arm.
So I innocently ask, "That will be just me right, since it's just an injection?" and he replies, "Oh no, you have to have the whole cognitive battery for the baseline; what we did today was just to approve you for the study. And your husband has to be here also." First thought: Damn, I thought I could practice drawing and remembering word and number lists for the next 2 years. Second thought: I need to practice for the next month!

I think it's heartening that all 3 of us (and our "partners") are committed to this in spite of the commute. Lol, when I went to Penn in the 70's, I remember that the Schuylkill Expressway was known also as the "Surekill Crawlway". Sounds like not much has changed. Mardi, you must live somewhere with much better roads and or fewer drivers that lol in Philadelphia or me in VA to make 170 miles in 2.5 hours. I think I speak for lol when I say we're both envious of at least the speed, if not the distance, you can travel.
4/4 and still an optimist!
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Re: CAD106 and CNP520

Post by lol »

Hi NF 52 and Mardi -

Not sure how it is determined about the CNP520 pill dose or the CAD106 shot dose. But, Mardi, if it means less hours of driving for you, then I glad you are getting the pills. You have the farthest to travel of the 3 of us.

This shot could be a pretty good birthday present, NF52 (a day early). Being proactive helps. Feels like we have a little bit of control over our future. I did not have any reactions right after my first shot, so you should be able to enjoy your birthday. Go out and have some fun! I was also relieved to pass the EKG, with heart problems in my family, too.

I go back 3/27 and 4/10, both for blood draws to test for antibodies. Feels like I am almost on break. My blood pressure shot up to 150 (don't remember the bottom #) on my last visit and blood draw, 2/16. This was shocking since I have always had low blood pressure, most of my life 90/60. They thought it was just "nerves".

NF52, don't worry about the cognitive testing. You are in the study. I do practice because I want my brain to keep exercising and expanding. :) They won't tell you the results, any way. I only got told that I didn't have dementia. Oh, thank you! Thank you so much! :roll: Can't help but take the testing seriously, though. Last time my "tester" was making some background noise and I got a little testy! Asked her to quiet down so that I could better focus. Guess we can't fight our basic personalities. :D
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