Greetings from 4/4 in Snowy Colorado

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
HeatherJ
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Greetings from 4/4 in Snowy Colorado

Postby HeatherJ » Mon Feb 03, 2020 4:55 pm

Hello All-
I have been a member of this site since May but have just mustered the courage to share my story. I’m 51, slender, physically active, healthy diet, have no signs or diagnoses of chronic illness (heart disease, diabetes, etc). Imagine my surprise when in April 2019 after a routine mammogram, I was diagnosed with Stage 1 Triple Negative breast cancer! Historically speaking, I am the picture of health, I rarely even catch a cold. Frankly I was shocked and confused when I was diagnosed with cancer. Because I had just turned 50, my oncologist recommended genetic testing (I have two teenage daughters), and naturally, I wanted to dive into my family history of breast cancer. I began asking lots of questions of my family. I will spare you all the sordid details but suffice it to say that I learned that the man I thought was my biological father wasn’t! In an effort to learn more about my family history, I took the 23&Me in May, and learned of my increased risk for AD (I’m 4/4). I have since learned (via 23&Me relatives) that my biological father died in 1979 of his 3rd HEART ATTACK at the age of 36. My mother (76yo), was diagnosed last year with MCI and is progressing into dementia. Mind you, all of this while undergoing treatment for breast cancer (lumpectomy, chemo, radiation). The trauma of learning of my 4/4 status was absolutely devastating; I had no idea where to focus my prevention attention (CANCER? A.D? BOTH?!). I am just now beginning to emerge from the fog (emotionally speaking) so I can take hold of some things and not live in fear.

Here’s what’s happening now: I was cancer-free when my tumor was removed in May—we monitor things every three months. I tightened up an already healthy diet (I follow Bredesen, Greger, Med diet). I eat mostly plants, fruits, veges, beans, nuts/seeds, salmon, shrimp, sardines, and some chicken. I don’t eat anything processed and stay away from sugar. I’ve started to sort through supplements (I take D3, bacopa, B-Complex & Methyl B12, a multi-vitamin, CoQ10, and fish oil). I know Bredesen recommends a bunch of things, and I’m trying to pace myself and not be completely obsessed with all of the recommendations.

I’m very grateful for this group—I seriously didn’t even have a category for any of this before May. I’ve bounced around the Primer and am wading through the Wiki pages (it’s A LOT of info and can be very overwhelming). Here are some high-level questions for the group:
I have engaged a Bredesen-trained practitioner in my area (Denver area, USA). She’s wonderful but testing and a customized program would cost around $7K. My regular insurance company will (and has) covered the basic tests like glucose, lipid panel, cholesterol, vitamin D, triglyceride levels. Honestly, it seems like an emotional, frenzied decision right now to fork over $7000—I’m committed to lifestyle changes and have zero cognitive symptoms or other signs of inflammation, etc. I would greatly appreciate your insight, knowing that you understand the gravity of a 4/4 status. Secondly, it seems to me that Bredesen’s recommended dosages of key supplements are MEGA dosages. Are these necessary for those in prevention mode of AD and are symptom-free? Finally, one BIG conceptual question that I still don’t really understand: are markers like insulin resistance, hypertension, diabetes, precursors to AD? In other words, if I adopt a lifestyle that follows the Bredesen Protocol (and other plant-based whole food models, paying close attention to exercise and sleep) can I still develop AD without these other elevated markers? Or do these things generally occur in tandem? I’m also VERY concerned that none of this matters, given my genetic predisposition. I’m having a really hard time getting past the feeling that I’m going to develop AD no matter what I do :| . Thank you all for taking the time to read my story (sorry for the length!).

anotherdreamer
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Re: Greetings from 4/4 in Snowy Colorado

Postby anotherdreamer » Mon Feb 03, 2020 7:55 pm

I'm sorry! That's a lot to have to handle in a very short time. Your obvious strength through it all is utterly amazing. From reading your post, you definitely know more than I do. I feel inadequate giving you any advice at all seeing how well you're already managing. I might have an answer to one of your questions though. I saw this article not long ago: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5754649/ It seems that they believe high triglycerides in midlife are a strong indicator of amyloid and tau later on. So that would be a precursor of sorts?

HeatherJ
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Re: Greetings from 4/4 in Snowy Colorado

Postby HeatherJ » Mon Feb 03, 2020 8:28 pm

Thank you! This is an interesting article--all of my numbers, including triglycerides were within the normal range. That's one good thing, right?!

Tincup
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Re: Greetings from 4/4 in Snowy Colorado

Postby Tincup » Mon Feb 03, 2020 8:33 pm

Welcome! Here's my 2 cents from CO as well. There is a person in my family who is E4 positive, is in their 30's and has brain cancer (glioblastoma). If they make it to the stage where their E4 status has a material negative impact, they will have won the lottery. My point is that cancer is here and now. Dementia, if it comes, is likely in the more distant future. Many of the things you can do to prevent cancer recurrence line up with what is suggested here.

For example, in this podcast Dr. Ruth Patterson describes a study looking at eating diaries of breast cancer survivors. They were trying to figure out what foods would reduce (or increase) the probability of recurrence. They came up empty and then someone suggested recoding the data to look at when the women ate. The result was that women who fasted 13 or more hours/day with these fasts starting before 8PM, had a 38% (from memory, so +/-) lower chance of recurrence no matter what they ate. This, of course lines up with what Bredesen suggests (in fact, he suggests a longer fast for E4's).

My family member had a consult with Dr. Nasha Winters regarding how to mitigate the dire statistics for their cancer. While they have not implemented every suggestion, they are still here and functioning at 30 months past diagnosis. In the glio world, this is a very long time. After the tumor resection, the neurosurgeon was asked what the statistics were, "12 to 18 months survival" was the answer. Dr. Winters book is here.

As far as heart disease goes, you might look into a CAC scan. If you get a zero score, then that would be less of a priority for you. I know there are scanners in Boulder and Littleton. If you want info on the one in Boulder, their contact info is in one of the posts in this search.

Also Ivor Cummins has much info on these scans at his site.
Tincup
E3,E4

anotherdreamer
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Re: Greetings from 4/4 in Snowy Colorado

Postby anotherdreamer » Mon Feb 03, 2020 8:35 pm

I think that’s HUGE. Take what I say with a few grains of salt. I’m new to the research and I’m still a bit of an idiot. The way it seems to me is apoe4 screws up your cholesterol handling. They’re the slacker gene. If you do everything right, it’s like letting them kind of coast a bit. They don’t have to be that good of employees because you’re not giving them much work. They can suck a little and still keep things running.

HeatherJ
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Re: Greetings from 4/4 in Snowy Colorado

Postby HeatherJ » Mon Feb 03, 2020 9:06 pm

Tincup--THANK YOU! I needed this--I need to fight one battle at a time and not let my fear overwhelm me. I will listen to the podcast by Dr. Patterson. Following my diagnosis for breast cancer, I immediately dug into the benefits of IF (for cancer prevention) and saw SO MANY consistencies between the functional approach (diet/exercise/sleep/stress/supplements) for cancer prevention and AD. I would be interested to know if the recommendation for IF is daily or a couple times per week. I've seen mixed reviews--fasting daily (for too long) affects longevity...? Anyway--I'll listen. Thank you!

Thank you, AnotherDreamer, for your encouraging metaphor--I need to count the wins!

Flo
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Re: Greetings from 4/4 in Snowy Colorado

Postby Flo » Tue Feb 04, 2020 1:41 am

HeatherJ wrote:Hello All-
I have been a member of this site since May but have just mustered the courage to share my story. I’m 51, slender, physically active, healthy diet, have no signs or diagnoses of chronic illness (heart disease, diabetes, etc). Imagine my surprise when in April 2019 after a routine mammogram, I was diagnosed with Stage 1 Triple Negative breast cancer! Historically speaking, I am the picture of health, I rarely even catch a cold. Frankly I was shocked and confused when I was diagnosed with cancer.
...
I’m also VERY concerned that none of this matters, given my genetic predisposition. I’m having a really hard time getting past the feeling that I’m going to develop AD no matter what I do :|.


Hi HeatherJ,

Welcome, officially (!) to the site! And thank you for sharing your story.

Since you've already found the Primer and the Wiki, I thought I'd share my story with you.
I know how that initial breast cancer diagnosis must have felt - I was 29 when I was told I had stage 4 breast cancer and it literally knocked the wind out of me. And I was fit, healthy, never ill, eating a (what I thought at the time was a) healthy diet, hardly drank alcohol. Just living with the possibility that it could come back at any time was enough for me not to get any further genetic testing done, so I don't know about my ApoE4 status. I'm now 47, I try to lead a balanced life. We eat a plant-based diet, I intermittent fast almost every day, I exercise and sleep well and I try and have some fun along the way. Mental and spiritual health also play a major part in all this I'm sure so I do my best to find a little bit of joy in everyday life. And when I'm feeling like it's a lost cause, I write 3 things down that I'm grateful for each day and why they make me feel grateful. Have you tried it? I find it's a great way to reframe my story and find hope.

In a similar vein to Tincup's, I thought this podcast was amazing about the benefits of intermittent fasting from the research carried out by Dr Satchin Panda.

From the sounds of it, you are doing everything you possibly can to follow the majority of the advice out there to live a healthy disease-free life: that's amazing! You should give yourself a pat on the back. So many people can't even get to that stage. You're giving yourself the best chance you can, well done!

Warm regards
Flo

Tincup
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Re: Greetings from 4/4 in Snowy Colorado

Postby Tincup » Tue Feb 04, 2020 11:03 am

HeatherJ wrote:I would be interested to know if the recommendation for IF is daily or a couple times per week. I've seen mixed reviews--fasting daily (for too long) affects longevity...?


In their data, it was daily. I'm not the correct person to ask. In 2017, I did nineteen 5-day fasts, water fasting 5 consecutive days out of 14. I was weight stable from the start of one cycle to the next. On almost all eating days since 2015, I've fasted 22 hours/day. I've also been keto adapted since Oct 2009. Doesn't mean my diet is keto as promoted in the media, but I do test material serum ketones on a morning test 99.9% of the time. My daily carb intake is >100g on most days. For the last six months of 2019, I intentionally ate around 200g carbs/day and still my morning serum ketones were 0 only once or twice. My logic has been that having material serum ketones is a proxy for a low level of insulin. Insulin is clearly needed and you don't need to be fasted all the time, but having long periods of low insulin is a good thing, in my opinion. Refeeding is also very important.
Tincup
E3,E4

mike
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Re: Greetings from 4/4 in Snowy Colorado

Postby mike » Tue Feb 04, 2020 11:51 am

HeatherJ wrote:Finally, one BIG conceptual question that I still don’t really understand: are markers like insulin resistance, hypertension, diabetes, precursors to AD? In other words, if I adopt a lifestyle that follows the Bredesen Protocol (and other plant-based whole food models, paying close attention to exercise and sleep) can I still develop AD without these other elevated markers? Or do these things generally occur in tandem? I’m also VERY concerned that none of this matters, given my genetic predisposition. I’m having a really hard time getting past the feeling that I’m going to develop AD no matter what I do :| . Thank you all for taking the time to read my story (sorry for the length!).

Heather, welcome from another 4/4! We're still trying to understand how ApoE works, so hard to know for sure. New research is showing that often neuron death is happening decades prior to AD symptoms. Most likely because the neurons are not getting enough fuel. E4s do not use glucose as well as E3s, but they do use ketones better than E3s. The Blood Brain Barrier is critical. Many of the markers you mention can damage the BBB. And with Diabetes, the treatment could be causing AD - the brain gets a fraction of the glucose that is in the blood, and if the blood glucose drops in half, then so does the glucose in the brain - potentially leading to neuron death since there is no ketone production. You are doing the right stuff, and as was already said, Cancer is here and now, AD is in the future. Depending on the cancer, many that depend on glucose will shrink with extended (not IF) fasting. You said you were cancer free, but I would think this could also work as prevention...
Sonoma Mike
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