New here? Some Best Practices

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Nicnac0526
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Re: New here? Some Best Practices

Post by Nicnac0526 »

Welcome Tim@1009,
I am so glad that you have found our community and have written your first post. I am sorry for the loss of your father and about your sister, that is very difficult. Thank-you for sharing your story and for your contribution. Reaching out and tapping into resources like this forum can be very beneficial. There are many supportive members here who are ready and willing to share their experiences, insights and expertise.
It sounds as though you have a keen awareness and willingness to learn. I love the way that you have taken positive steps to support your journey, even if it possibly hasn't turned out quite as you as you anticipated.

Since you have been a member for a few years, you may well be aware of the important sections of this forum, however, as a welcome intern I will highlight them for you.

The Primer is an amazing introduction and was written by a member of our community who is doctor and APOE4/4. She is so knowledgable and optimistic!

The The How to Guide offers tips on how to navigate forums and respond to posts including how to quote members (use the quotation icon in the upper right of any post) so they get an email notification of your post. It also demonstrates how to use the Search function for topics (in the top right-hand corner of the site that you can use by clicking the three dots next to your log-in id). You can use that to search for topics in the various forums.and how to subscribe to topics of interest in the forums.

We are glad you found us and hope that this site will continue to be useful to you in your journey. Please do continue to share when you feel able. If there is anything else you want to know and can't find it on the site, please don't hesitate to reach out!
Warm regards
Nicky
roanne42
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Re: New here? Anti-amyloid trials

Post by roanne42 »

Hi Tim,
I’m so sorry to hear about your father and sister. I too have been a member of this site for several years (I also have two copies of apoe4), but this is my first post. Your experience resonates with me, although — with the exception of a grandmother who developed cognitive issues in her nineties — I have no family history of Alz. My apoe status led me to participate in a diagnostic trial last fall. In addition to cognitive tests, it included an amyloid pet scan. I tested cognitively normal (age 60), but the pet scan was amyloid positive. I’m not sure whether you were given your SUVR score for the scan you had as part of the AHEAD eligibility tests; if not, it is worth asking for. If you’re not familiar with SUVR, it stands for “standardized uptake value ratio.” Practically speaking, it is a threshold number — if you are above it, you are amyloid positive; below it, you are negative. I tested significantly above the threshold; you may be just below or significantly below. Either way, this is great news! However, given your family history, knowing your SUVR value might help you determine whether to participate in one of the other ongoing anti-amyloid trials for pre-clinical (cognitively normal) Alz. Available evidence to date suggests that the earlier amyloid deposition is treated the better.

In my case, I have just completed the eligibility tests for a Donanemab trial. Instead of an amyloid scan, it requires that I test positive on a p-tau plasma test. Given my apoe status and amyloid positivity, I expect it to be positive, but roughly 20% of amyloid positive, cognitively normal individuals test negative for tau. There are also cases where individuals test positive for tau and negatively for amyloid.

A few other important factors (at least in my case): I decided against the Lecanemab trial as it does not have a planned open-label extension. Which means that if I was in the placebo arm of the trial, I would not be given the opportunity to take the drug once the study was unblinded. With my SUVR amyloid value, this is important to me. Finally, as you are probably aware, there are significant risks for brain edema and micro bleeds (ARIA-E and ARIA-H) associated with anti-amyloid therapies, especially for apoe44’s. I’ve decided that, given my amyloid level and overall low cardiovascular risk, the potential benefits outweigh the risks. As someone who is amyloid negative, you may decide you have time to see how these phase III anti-amyloid trials pan out.

I hope this is helpful. Best of luck to you.
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Re: New here? Anti-amyloid trials

Post by NF52 »

Tim@1009 wrote:...I met with the AHEAD Study team and did extensive cognitive/memory testing which confirmed at this time I do not have cognitive/memory issues. I had blood tests done. One test was to confirm my APOE4 status. I then had a PET scan of my brain to determine the amount of Amyloid plaque in/on my brain. It was revealed that I have no Amyloid plaque in/on my brain. This means I can no longer be part of the AHEAD Study. The doctor heading this study said I am a anomaly of sorts because of my APOE4 status and my age (64).

I am on this site to see about folks with similar APOE4 status as me. Thanks.
roanne42 wrote: Sun Mar 13, 2022 2:10 pm Hi Tim,
I’m so sorry to hear about your father and sister. I too have been a member of this site for several years (I also have two copies of apoe4), but this is my first post. Your experience resonates with me, although — with the exception of a grandmother who developed cognitive issues in her nineties — I have no family history of Alz. My apoe status led me to participate in a diagnostic trial last fall. In addition to cognitive tests, it included an amyloid pet scan. I tested cognitively normal (age 60), but the pet scan was amyloid positive. I’m not sure whether you were given your SUVR score for the scan you had as part of the AHEAD eligibility tests; if not, it is worth asking for. If you’re not familiar with SUVR, it stands for “standardized uptake value ratio.” Practically speaking, it is a threshold number — if you are above it, you are amyloid positive; below it, you are negative. I tested significantly above the threshold; you may be just below or significantly below. Either way, this is great news! However, given your family history, knowing your SUVR value might help you determine whether to participate in one of the other ongoing anti-amyloid trials for pre-clinical (cognitively normal) Alz. Available evidence to date suggests that the earlier amyloid deposition is treated the better.

In my case, I have just completed the eligibility tests for a Donanemab trial. Instead of an amyloid scan, it requires that I test positive on a p-tau plasma test. Given my apoe status and amyloid positivity, I expect it to be positive, but roughly 20% of amyloid positive, cognitively normal individuals test negative for tau. There are also cases where individuals test positive for tau and negatively for amyloid.

A few other important factors (at least in my case): I decided against the Lecanemab trial as it does not have a planned open-label extension. Which means that if I was in the placebo arm of the trial, I would not be given the opportunity to take the drug once the study was unblinded. With my SUVR amyloid value, this is important to me. Finally, as you are probably aware, there are significant risks for brain edema and micro bleeds (ARIA-E and ARIA-H) associated with anti-amyloid therapies, especially for apoe44’s. I’ve decided that, given my amyloid level and overall low cardiovascular risk, the potential benefits outweigh the risks. As someone who is amyloid negative, you may decide you have time to see how these phase III anti-amyloid trials pan out.

I hope this is helpful. Best of luck to you.
Welcome, both Tim and roanne42, from another ApoE 4/4! Like both of you, I have been involved in clinical trials for people with two copies of ApoE 4 and normal cognition, and find it wonderfully encouraging how many of us there are who can say that!

I also am very fortunate to serve as a member of a Research Participant Advisory Panel composed of current and former trial participants or care partners of participants through the Alzheimer's Clinical Trial Consortium. The ACTC is funded by the National Institute on Aging (NIA) with a mission to work with research centers across the U.S "to provide an optimal infrastructure, utilizing centralized resources and shared expertise, to accelerate the development of effective interventions for Alzheimer’s disease and related disorders" and to promote inclusion and diversity in all clinical trials and in clinical studies personnel.

Like you both, I trust that the benefits outweigh the risks, and since I get to watch great presentations about the research, I know that the risk of ARIA-E has dropped from the apparently 44% of those on the aducanumab trials with ApoE 4/4 to about 25% on the donanamab trials (TRAILBLAZER series) and about 15% for those on lecanemab (earlier studies of BAN2401 used in AHEAD). That's attributed to different structures that focus on oligomers versus plaque, and I assume is similar to not every COVID vaccine, or every statin or any other class of drug causing comparable risks (or benefits).

As an aside, I used the "quote" icon in Tim's post to bring over part of his post along with yours, roanne42, so that you would both get an email about my reply and he would be sure to see your wonderful reply to him. Using the quote icon is clunky, but effective at keeping conversations going!

Here's a link to the donanemab trial description of Clinical Trials, the NIH database. Trailblazer-ALZ3 for those who are interested. While the title of the trial says it is A Donanemab (LY3002813) Prevention Study in Participants With Alzheimer's Disease it's important to note that this is referring to the presence of amyloid and tau as imaging biomarkers which are viewed as indicative of "preclinical Alzheimer's disease", analogous to "pre-diabetes" in that these are NOT a diagnosis of either MCI or Alzheimer's dementia. The naming of everything as part of a 20-year, not-predestined disease process is confusing at best!

Please continue to post and share your experiences!! We "super-agers" as I heard a scientist refer to us last fall, need to speak up loud and clear!
4/4 and still an optimist!
Tim@1009
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Re: New here? Some Best Practices

Post by Tim@1009 »

The Ahead Study is looking for, working with people that have intermediate or elevated Amyloid plaque. This was measured in the PET scan. This PET scan used an experimental radioactive (low level) tracer to “light up” the plaque. I showed no plaque. The doctor stated if l started to develop plaque now, “it would be decades before it affected me”.

I apologize. I do not know what am looking for or asking.
Nicnac0526
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Re: New here? Some Best Practices

Post by Nicnac0526 »

Tim@1009 wrote: Sun Mar 13, 2022 6:53 pm I apologize. I do not know what am looking for or asking.
Hi Tim@1009,
There is absolutely no need to apologize, it is a complicated journey. You are part of a warm and supportive community who value your brave and knowledgeable input. We are passionate about preventing, reversing and stopping AD. Please do post anything when you feel able. All questions, thoughts and experiences are valuable and will always help someone.
Warmly
Nicky
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Re: New here? Some Best Practices

Post by JHanson101 »

I found out I carry one apoe4 gene over Covid. It has taken over my thoughts. I’ve made big changes. Lost weight and wear a glucose monitor to check levels. I’m not diabetic but it’s good to know. Being a woman and 46yrs I’ve heard that is a higher risk. I’m not in menopause yet but wonder if hormones are the way to go to help with apoe4. I would rather jump off a bridge then have Alzheimer’s and have my children take care of me. Losing my mind scares me. I feel hopeless at times. It crosses my thoughts everyday. Finding out helped me make big changes but also puts my mind on edge. I’m trying to be cautious when eating etc. It drives me crazy sometimes. Any hope for the future? It’s frustrating.
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Re: New here? Some Best Practices

Post by NF52 »

JHanson101 wrote: Sat Jul 02, 2022 2:35 pm I found out I carry one apoe4 gene over Covid. It has taken over my thoughts. I’ve made big changes. Lost weight and wear a glucose monitor to check levels. I’m not diabetic but it’s good to know. Being a woman and 46yrs I’ve heard that is a higher risk. I’m not in menopause yet but wonder if hormones are the way to go to help with apoe4. I would rather jump off a bridge then have Alzheimer’s and have my children take care of me. Losing my mind scares me. I feel hopeless at times. It crosses my thoughts everyday. Finding out helped me make big changes but also puts my mind on edge. I’m trying to be cautious when eating etc. It drives me crazy sometimes. Any hope for the future? It’s frustrating.
Welcome back!

Since at 70 I am old enough to be your mom, I hope you don't mind if I offer a virtual hug. I have three adult children with ApoE 3/4, one of them a daughter a little younger than you, and honestly feel they can look forward to a life without Alzheimer's.

With two copies of ApoE 4 (making me an ApoE 4/4), the first prediction I saw in 2014 was that I would be diagnosed with dementia at age 68. Wrong!! Instead, I spend time with my children and grandchildren, plan post-COVID trips (fingers crossed), serve as a Consumer Reviewer on academic AD research grants since 2018, am a member of the Support Team on this forum, and serve on a national advisory board of participants in Alzheimer's clinical trials with people who are caregivers of those in clinical trials, those at risk of AD but cognitive fine, like me; and those with Mild Cognitive Impairment of mild Alzheimer's disease. {By the way, I can not tell who has MCI or mild AD on a Zoom call and neither could you, since most of these people are like most of us, with strengths and weaknesses that we can work around. We tend to picture someone with AD in a nursing home, but most people with this disease are involved with their families, active in their communities, travel, have goals they plan to reach and have strategies to age-in-place.). I know of people with ApoE 4 who are officers in community non-profits, who play in bridge and golf tournaments, who are lawyers and doctors and ministers. Prevention trials now recruit people ages 55-80 who have one or two copies of ApoE 4 and/or amyloid with normal cognition and can find thousands of them! (Many more thousands are out there, but unable to participate due to distance, requirements or perhaps their own lack of experience with such a trial.)

It's important to remember that research into lifestyle prevention has really solidified in the last 10 years on strategies that you can find in our Primer, written by a wonderful woman whose words I read and re-read when I was new to knowing my ApoE 4 status: Here's just a sample from the beginning of her Primer:
I hope to give you hope that there is much we all can do to lower our risk of developing Alzheimer's....
A little bit of background about myself: I am a doctor in a beautiful small country far away from the USA. I work in family medicine (USA word) general practice (British based country word). I have a passion for education, and a passion for life ...

It’s very scary to open up 23andMe results or run your raw data through Promethease or similar and see red words flashing at you “high risk”.... I promise the pain fades, and now I just live my life... The first thing is to stay calm and think carefully.
GENETICS IS NOT DESTINY. Not everybody with ApoE4 gets Alzheimer’s Disease...

The reason why not everyone gets these is twofold.
1. We are extremely complicated and scientists have only identified a few of the many, many genes in our body that work together to make us ourselves. Also, everyone is different, which makes it harder to work out what exactly is going on.
2. Our genes switch on and off depending on their environment. This is called epigenetics Epi is Greek for “outside, around”.
a. This means that everything in the body surrounding the DNA affects how it acts. THIS IS UNDER YOUR CONTROL. This is one of the main purposes of our forum – to help each other make the best choices in lifestyle and diet so that our ApoE4 variant affects us less.
b. Scientists have identified a range of factors that we think can help us prevent ApoE4 from causing AD or CVD in us. I will explain them a bit later.
c. Please take a minute to think this very carefully – you have the power to change your future, by the choices you make every day. I am not going to pretend it will be easy, but I promise you that you will feel much, much healthier for the changes you will make.
Your question about menopause is a great one, and the scientific consensus on that has changed remarkably since my generation was warned off all hormone replacement therapy. Here's a 2020 article with audio from a neurologist whose work I greatly respect: Dr. Richard Isaacson, formerly head of the Alzheimer's Prevention Clinic at Weill Cornell Medicine and NewYork-Presbyterian. Why a Brain Doctor Asks About Hormone Replacement Therapy. [He recently relocated to a warmer climate in Florida.]

He is also the co-author of a 2021 article that I found helpful in sorting through recommendations for diets and supplements: Precision Nutrition for Alzheimer's Prevention in ApoE4 Carriers As you may have realized, one size doesn't fit all, and many smart people on this forum have found diets that have big principles in common (don't live on Coke and Cheetos, for example) but differ significantly in the details.

The likelihood of someone my age with ApoE 3/4 getting Alzheimer's by age 85 (the average US lifespan) is only 20-25%, from a 2017 meta-analysis of population-based studies. That number should plummet with your generation, given improved diet, exercise, education and occupational choices for women, hormone replacement therapy and current prevention clinical trials.

Try replacing those hopeless thoughts with a different mantra of "I am in the game to win and I call the plays; not the doubters."
4/4 and still an optimist!
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Re: New here? Some Best Practices

Post by JHanson101 »

Wow! I really appreciate the positive response. I was really thinking my life was going to be over soon. Any sign of mental decline and I was going to end it. This gives me hope instead of fear. I appreciate the information and for you reaching out and taking the take to write to me.
Thank you!
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Re: New here? Some Best Practices

Post by Phillippine1 »

Thanks for the new-comer suggestions. Genetic testing and recent labwork on homosysteine etc are all pointing to developing AD fairly quickly. I'm glad I stumbled upon Dr Bredesen's Protocol but am completely overwhelmed with the number of supplements and dietary changes. I'm glad for this site to help me with this. Are there practitioners who specialize in helping people with the Protocol?
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Re: New here? Some Best Practices

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Phillippine1 wrote: Thu Jul 07, 2022 12:02 pm Thanks for the new-comer suggestions. Genetic testing and recent labwork on homosysteine etc are all pointing to developing AD fairly quickly. I'm glad I stumbled upon Dr Bredesen's Protocol but am completely overwhelmed with the number of supplements and dietary changes. I'm glad for this site to help me with this. Are there practitioners who specialize in helping people with the Protocol?
Yes, certainly through Apollo Health, that Dr. B is associated with. If you DIY it, I suggest you pick one thing to work on (or a piece of one thing). Do that until you are really comfortable, then pick something else & so on.
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