CAD106 and CNP520

Insights and discussion from the cutting edge with reference to journal articles and other research papers.
Mardi
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Re: CAD106 and CNP520

Postby Mardi » Sat Mar 11, 2017 7:32 pm

Greetings to both of you.....
Hope all is well.......

Taking my pills every day. Seems like my blood pressure has gone up, but they say that is not on the list of side effects. I have been on a low dose bph meds for some time with no problems. Either my pressure went up due to my regular meds not working suddenly or it is the study drug. I am working with my primary physician to figure this out. Seems like caffeine and salt are also causing a spike. Other than that everything seems ok.

Traveling is still a pain.... but it only 120 miles one way (not the number mentioned in above post). The main problem is having to drive either right through Atlanta or around it. Both options are difficult. We end up in rush hour at least one way.

NF52---
I was surprised to see you were scheduled for the FDG PET as I was told they were no longer doing it. Also told they were no longer doing the spinal tap.

But enough of me....... Hope both of you are doing well.
Apoe 4/4 ;)

NF52
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Re: CAD106 and CNP520

Postby NF52 » Sat Mar 11, 2017 9:28 pm

Hi Mardi (and lol),
Sorry to hear about your blood pressure issue. I hope you and your doctor can tweak something to resolve that.
I had my initial MRI yesterday, a fun 40 or so minutes. I'd had one about 9 years ago due to vertigo, so knew I wasn't claustrophobic, but had forgotten how loud it was, even with the local classic rock station playing into headphones. I lay still enough that my hands fell asleep! Good thing it wasn't a PET scan--probably would have shown my sensory system haywire!
The FDG PET scan was listed as voluntary on the consent. Since it supposedly helps identify cellular level
changes in glucose earlier, I figured I'd be a guinea pig and do that. The study coordinator mentioned that they have to have the radioisotope (or whatever) delivered from the city where I live!! I volunteered to have the FDG PET done here, but no chance. He did joke that "maybe you could ride up in the car with it". As for the spinal tap, my understanding is that is an early indicator of tau. Not what the study targets, but I suppose they'd like to find out if someone is moving toward dementia from tau, even if the study drugs are working. I said no thanks to that volunteer "opportunity."
Not sure why some sites would differ from others.
Seems like all 3 of us are coping with going through or into or around a major metro area. We should encourage people in Rochester NY to sign up. Aside from the major windstorm they had last week that cut power to 100,000 people, the commute is a breeze no matter where you live.
I did a Facebook plug for Gene Match on International Women's Day last Wednesday, as something women could do for free and easily to help women--and men--affected by Alzheimer's. Got a few likes. Hope Dr. Tariot and others can spread the word.
Happy Daylight Saving Time to all! And Happy St. Patrick's Day soon to those who enjoy some Irish heritage, music, beer, visits, or relatives.
4/4 and still an optimist!

lol
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Re: CAD106 and CNP520

Postby lol » Sun Mar 12, 2017 5:05 pm

I was also told that the FDG PET was no longer included in the study.

Mardi, I posted on the previous page that my blood pressure has also gone up - from 90/60 to 150 and forgot the lower # (still functioning; this was just lack of focus :)) . Pretty shocking since I used to have to stand up very slowly so as not to pass out because of low blood pressure. Has to be a symptom of the drug.

Have enough Irish in me to celebrate St. Patrick's Day, B52!

NF52
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Re: CAD106 and CNP520

Postby NF52 » Thu Mar 16, 2017 11:08 am

FYI, my Generations Study buddies:

I was curious about the reports from both of you on increased blood pressure, so used the magic of Google. Found this 2016 study that showed 10% of people in a Phase I study of CAD106 showed a non-serious adverse event of "hypertension". Don't know about CNP 520. No details on how long-lasting or significant the hypertension was for participants. http://www.trci.alzdem.com/article/S2352-8737(16)30050-6/pdf

Good news (I guess) is that no one in the placebo group got hypertension, so I assume Mardi and lol that unless you both have developed hypertension when you see the study staff, you're getting the real drugs.
4/4 and still an optimist!

lol
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Re: CAD106 and CNP520

Postby lol » Tue Mar 28, 2017 12:24 pm

Yesterday was a shot day after all. Also a voluntary blood draw to "assist" in assessing 4/4 quirks.

This time, my blood pressure was fine. After the shot, 113/75, more like normal.

But, as before, I am exhausted and have spent the day lounging around. Feel like a lazy slob.

Up until around the 5th shot, according to my study coordinator, the shots have a cumulative affect. My arm really hurts at the point of injection, and this hasn't happened before. I couldn't sleep on that side. Not a big deal; it is temporary.

Mardi, I read up more on the CNP520. Are you getting any reactions? Is there also a cumulative affect with these pills?

Be thinking of you on 4/3, NF52. Let us know how it goes. We have your back!

NF52
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Re: CAD106 and CNP520

Postby NF52 » Tue Mar 28, 2017 12:44 pm

Hi Study Buddies!
My April 3 date to start the fun has been pushed back. I was supposed to get the amyloid PET scan last Friday but heard two hours before that the supplier called and said they couldn't supply the Amyvid for the scan! The study coordinator and nurse were both VERY apologetic.

Since I was on the train 20 minutes from D.C., with a return 5 hours later, I got a long walk in among lots of 8th grade students on D.C. trips. Also saw an impressive Della Robbia exhibit and some dazzling paintings by Goya and his "students" at the National Gallery of Art. The Gallery had an annual massive display of azaleas inside, which various toddlers were doing their best to dismantle.

Met a few interesting folks, including a 72 yr old New Orleans priest who spent Hurricane Katrina sitting on his roof with his barking dog "feeding the alligators." (Said it was terrifying.) So not entirely a wasted day, but all the same frustrating. Got home at 8:00 PM.

So April 3 is now the re-scheduled PET and I think I'll drive into D.C. If there's a last minute cancellation, I can at least turn around and drive home. (They promise there won't be.) Still waiting for the FDG PET, which now has to be re-scheduled from March 31 (has to be after the amyloid PET) and the first injection and cognitive battery, which may be April 12. But, since I used to give lots of tests with age norms, I figure my 65-year old self will score a few more points than my 64 year old self for the same raw score.

Hope you're side effects go away soon lol. Not sure how many people would sign up to take a wonder drug at age 40 or 50 if it makes them need a day on the couch after each shot. BTW, did you see JulieGee's plug for Generations in the forums? Hope it gets a few folks to sign up.
4/4 and still an optimist!

lol
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Re: CAD106 and CNP520

Postby lol » Tue Mar 28, 2017 1:12 pm

Pain the butt, NF52. That is just bad. You have a great attitude and you need to have it. The organizational problems come up and they have it at Penn, too. Like you said, you can't really blame anyone, it is just frustrating. Not the study site's fault.
Going to check out JulieGee's plug.
Hang in, NF52.

P45VA
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Re: CAD106 and CNP520

Postby P45VA » Fri Mar 31, 2017 10:08 am

Dear Fellow Generation Study participants,

I too am participating in the Generation Study. My test site is Georgetown U. Hospital. Haven't yet started the second level of testing. One of my problems is that I live alone. Thought of asking my daughter who lives nearby to be study partner, but don't want to discuss this with her yet ( she obviously has at least one APOE4 gene.) Waiting until my son is here in June to discuss it with them both ( and in person.) Have any of you discussed this with your adult children yet? Any suggestions as to how to approach it? I am also thinking of asking a close friend who lives in this area to be my study partner but I see her only every 6 weeks or so and I dont know if that would be sufficient. Do any of you know if that would be acceptable?
Thanks for your help-

lol
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Re: CAD106 and CNP520

Postby lol » Fri Mar 31, 2017 10:56 am

So very nice to meet you, P45VA. :)

You and your study partner will be asked the same questions separately. Hopefully, the answers match up!
Some examples: 1. What did you do last weekend? 2. Any big events occur these past 2 weeks?
Your study partner should be aware of what you are up to, but doesn't have to be a spouse or someone living with you. At least, that is what I think.

We had a family blow up with the 4/4 and 3/4 discoveries. My daughter and I did not want any involvement with 23&me or knowledge of our genetic vulnerabilities. My husband and son pushed and I caved in and did the spit. Our daughter and her husband got tested after finding out her low odds. Yes; she is also 4/4. Son is 3/4. Tore the family apart for a while, but love won out. We are a close family. Maybe you could ask your daughter if she would want to know anything about your genetic testing, knowing that it would impact her. That way, it is her decision.

Glad you are part of the study. You will figure out the logistics. xo

lol
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Re: CAD106 and CNP520

Postby lol » Fri Mar 31, 2017 11:06 am

P45VA - Just thought of something. Don't know if the father of your children is deceased or the 2 of you are separated. Hopefully alive, and you could explain your 4/4ness to him and ask him to get tested. Most people are 3/3. If he is 3/3, you can assure your children that they are merely 3/4. Sounds wonderful to me! You could enlist their support for your future without making them concerned for their future.


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