ALZHEIMER’S RESEARCH RIGHT NOW! #15: Math Formula Predicts Your Alzheimer’s FUTURE PRACTICALLY 100% OF THE TIME!?!?!?!?!?!?! And OTHER New Discoveries!

From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…

Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Using math to predict my chances of getting Alzheimer’s? (Why isn’t THIS headline news instead of another probably disappointing “drug” that costs a gazillion dollars and just does the same thing that some different drug did before? (https://breastcancerreaper.blogspot.com/2021/07/alzheimers-research-right-now-14-fda.html))

Two separate studies show similar results in VERY different ways.

In the first, scientists used stem cells in people (taken with their permission, these cells come from an individual – basically cells that aren’t heart or brain or skin or nerve cells. They were able to “turn on the cells” so they became new brain cells in a test tube. The people they started with had either been identified with Alzheimer’s or had passed away from Alzheimer’s complications. The new cells aged, and as they did, they produced the two main suspects in AD – amyloid plaques and Tau tangles – plaques and tangles. They behaved exactly as the cells in the study volunteers had.

The result: they found that there is NO SINGLE THING that causes Alzheimer’s in people. It’s a complicated mixture of genetics, environment, exercise, what you eat, and even what kind of medications you take. Only fifty people took part in the study – but it has yielded some startling information and only the future can tell what else we might learn!

The second discovery? “Researchers from Lithuania developed a deep learning-based method that can predict the possible onset of Alzheimer's disease from brain images with an accuracy of over 99 percent.”

OK, let’s unwrap this a little. What’s “deep learning”? “Deep learning is a…technique that teaches computers to do what comes naturally to humans: learn by example…[it’s behind driverless cars, letting them tell the differences between a stop sign, a pedestrian, and a lamppost. It lets you use Siri or HeyGoogle, or whatever system to voice control your phones, tablets, TVs, and hands-free speakers. Deep learning lets your computer “learn” to perform classification tasks directly from images, text, or sound.”

So, a computer with the deep learning program has learned to predict whether or not I’ll get Alzheimer’s – with nearly 100 % accuracy!

The problem? You have to get an fMRI scan for this to work. What the heck’s an fMRI? “Functional magnetic resonance imaging (fMRI) measures the small changes in blood flow that occur with brain activity…fMRI may detect abnormalities within the brain that cannot be found with other imaging techniques.” It’s the detection of the abnormalities that form the basis of the ALGORITHM (a mathematical formula) that analyzes changes in a person’s brain over time.

Of course, PEOPLE could do this, but it takes lots of time. Computers can do it faster and better. But THAT’S NOT WHERE IT STOPS; working with the computer data, doctors can also look at variables outside of what the computer was programmed to do….

Neither of these techniques – and that’s what they are, sharpened tools of things scientists have been trying to do for yours, combined with cloning techniques and advanced computer techniques – to better understand what goes on inside an AD person’s head. Once they understand what IS happening, they can figure out how to STOP WHAT’S HAPPENING…

And that’s when we get a cure.

Resources: https://medicalxpress.com/news/2021-09-brain-patient-specific-alzheimer-insights-cognitive.html, https://medicalxpress.com/news/2021-09-algorithm-alzheimer-percent-accuracy.html, Deep Learning: https://machinelearningmastery.com/what-is-deep-learning/
Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg

ENCORE #166! – Metastatic Breast Cancer: Skin Cancer (aka Melanoma)

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

“Where’d this come from?”

Well, see, my brother, sister, and sister-in-law were all diagnosed with skin cancer and successfully treated. As well, an old friend and teaching colleague of mine was recently diagnosed and treated for skin cancer. (The worst part there was that he’d posted a picture of the excision on FaceBook and many (if not all) of US teased him about bonking his head, etc. Thoroughly stung when he later announced that it was a cancerous spot removed, I apologized both on his timeline and to him in person. NOT that I “should have known”, even so...)

Lately, I’ve had these dry, red patches on my face and while using lotion makes them fade, I have (duh) been wondering if they were signs of skin cancer. That led – at least in my mind – to wondering if there was any connection between breast cancer and skin cancer.

Not surprisingly, there is: “Since breast cancer is the most frequently diagnosed non-cutaneous (non-skin) cancer among women in the United States, it is not surprising that many individuals with breast cancer will develop melanoma (the deadliest form of skin cancer) and vice versa...recent studies exploring how often individual patients develop both cancers suggest that it [is] more than just coincidence: A recent study by Murphy, et al, for example, found that patients with either breast cancer or melanoma were almost four times more likely to develop the other malignancy than probability would lead researchers to expect. Specific causes linking the diseases may be in play, and genetic or environmental factors may also contribute. On the other hand, the association may at least partly result from more rigorous detection – in other words, a detection bias. This occurs when health care providers who carefully monitor cancer patients detect a second cancer that might otherwise have been missed.”

Also: “Sometimes cancer cells can start growing in the skin. This is not the same as having skin cancer, melanoma, or cutaneous T cell lymphoma (a type of lymphoma that affects the skin). The secondary cancer may start to grow on or near an operation scar where the primary cancer was removed. Or sometimes secondary skin cancers can grow in other parts of the body.

A secondary skin cancer looks like a pink or red raised lump (a bit like a boil). Skin nodules can be treated. It is important to tell your doctor if you think you have one, because if it is not treated, it may become ulcerated [has a ‘cauliflower’ look to it; also it can be weeping].”

So it appears that breast cancer CAN spread to the skin – yet it doesn’t seem to be a common occurrence. I had a bit of trouble even finding places where the two kinds of cancers were linked. That doesn’t make it comforting – just one less-likely thing for ME to worry about.

Resources: http://www.skincancer.org/skin-cancer-information/melanoma/breast-cancer-melanoma-link, http://www.cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/grow/where-a-cancer-spreads

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

GUY’S GOTTA TALK ABOUT BREAST CANCER #47…Rearing Its Ugly Head In the Life of an Old Friend…AGAIN…

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

A few hours ago, I talked with an old friend of mine about his wife, who has metastatic breast cancer of the bones. He’s a writer of some note, though I met him long before his career-defining (or deadening; he might accept either one or both…) short story, then a novel that won a prestigious SF award. His career seemed to be on a meteoric rise.

And then it wasn’t and now, despite the story and the award-winning novel, he really doesn’t write fiction much anymore. He focuses on writers like me, who may or may not be “up-and-coming” (at the ripe old age of sixty-four). At any rate, cancer, in our respective wife’s cases, is no respecter of persons.

In fact, you might say that breast cancer is anti-personnel. Like a mine, it can be laid on a road that appears perfectly clear. It can be laid in a rice paddy or a corn field used by villagers or tourists, by an enemy soldier or a friendly soldier or someone out to wreak havoc and sow terror.

Her bone cancer has receded and surged; she’s been declared cancer-free and then informed that the cancer had returned. My friend is retired from his regular job now, so he spend six hours a day doing a medication infusion; another six hours a day cleaning, keeping house, comforting friends and relatives, and feeding himself. Absolutely, he has help. Absolutely others are terrified of the return of breast cancer…

He sleeps about five hours a day, and the rest of life occupies the other seven hours doing everything else that needs doing (like building a ramp into their home with his son) – and running an online magazine called STUPEFYING STORIES.

I met my friend long before he’d started SS, in a writer’s group. We worked together while he was becoming famous, and then parted ways for various adventures. We reconnected several years later when I stumbled across one of his early blogs. I started contributing, and we became friends again. Then I called him one day to tell him that my wife had been diagnosed with breast cancer.

He told me that his wife had been diagnosed with breast cancer several months earlier, but being a private person, he told people on a need-to-know basis. Our pain bonded us, and we’ve been in touch ever since. I was a slush-pile reader for his magazine and even wrote a story for the very first issue…

So…while waiting in the hospital for a checkup and his wife’s treatment, he posted a picture and asked if anyone was interested in writing a story using it as an inspiration. I saw it, and after two hours, I had a story. I submitted it, and instead of the regular email accepting it, I got a call from an unknown caller last night.

He left a message, and when I recognized it as my friend, I called him back immediately. He liked the story and wanted to publish it today. Once we’d chatted about that, I asked how his wife was doing.

The conversation turned serious as only a conversation between two people who intimately understand the horror of breast cancer can run. I finished by saying, “All I can say is that we’re praying for the two of you. I can’t offer anything else. It’s just our prayers.”

He said, “But you have. You wrote the story. It’s a good story. You did that and it made me feel good.” We said our goodbyes and the next day, I wrote this entry.

Ultimately, this whole story was all about one thing: when you talk to someone whose loved one is suffering from breast cancer – or any cancer – you don’t offer platitudes or encouragement or anything else tangible. You offer yourself; your care; your heart; and (yes), your love. It’s all we have in the closest parts of our hearts, and sometimes, it’s just what they – or we – needed.

The story that came from his suggestion: http://stupefyingstories.blogspot.com/2021/08/doctor-to-undead-by-guy-stewart.html
Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

ENCORE #165! – Biking and Walking and Haircuts for Causes

From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared five years ago in August of 2016…

I have been “funding” for causes ever since I rode in my very first March of Dimes Bike-a-thon in 1972. It was late spring, but the day we started it was snowing. Not blizzarding; not blinding…but snowing.

I finished the twenty-five-mile ride that had taken me around the Minneapolis lakes and out to Anoka. As weary as I was, I realized that I was hooked.

I did a few more of those, a couple of other “-a-thons” and then nothing really for several years.

A dozen years ago, my wife was diagnosed with Type-2 diabetes. I joined several bikes and walks, and one summer, my son and I did the 45-mile bike for diabetes. We did that twice, and one summer I did it alone. The next summer, my son invited me to ride with him on a fund raiser against MS, as a friend of my wife’s passed away because of it.

Then came breast cancer five years ago. There were no “doable” biking events for me then – I was in no shape to do the Susan G. Komen bike-a-thons at the time, so for a while I did nothing.

Three years ago, my school district sponsored the Relay for Life and we finally “came out of the closet”. We’d avoided it before then, though I’d been asked and we’d discussed it. For whatever deep-seated reason, we didn’t feel ready to join the even. We took the big step two years ago (http://breastcancerreaper.blogspot.com/2014/05/guys-gotta-talk-about-2the-relay-for.html) and then again last summer (http://breastcancerreaper.blogspot.com/2016/05/relay-for-life-2016-today.html). The group of young people with whom we walked was vital and dedicated. It was delightful!

I have yet another cause now – Alzheimer’s. My father was diagnosed a few years ago, and now the disease rears its hideous head on a near-daily basis. He lives in a memory care unit, but the sad fact is that there is absolutely nothing that can be done for him. Though undiagnosed, I think my mother suffered from it as well; though with her other issues, I’m not sure if it was a cause or effect. I only that know she’s been in a major fog for months.

I realized that after she passed a week ago, there were far too many “causes” in my life; far too many medical problems with events to raise money to fight for a cure.

While I’ve recently started to feel a pressure of “can this go on?”, I also realize that while we do in fact, live in the 21st Century and there are many things we CAN do; there are still so many things we CAN’T do that it can seem overwhelming…

The wife of a pastor of mine once said, “It’s better to light a candle than to curse the darkness.”

I pondered this for many years, not really understanding it. Now approaching my 60th birthday, I think I may have a handle on it: I will keep this blog rather than start another. I only have so many candles and I’ve tended this one for the past five years. While it’s not comfortable, it’s a candle I now know well – and it’s a candle that has truly pierced the darkness. I will keep lighting this one for a long time to come. (What about the haircuts? That was part of a fundraiser for the high school theater department and covering the event earned me my first piece of PAID writing!)

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

Encouragement (In Suffering, Pain, and Witnessing Both…) #17: SUPPOSED to be "Good Words From the Medical Community", But...

The older I get, the more suffering and pain I’ve experienced; and the more of both I stand witness to. From my wife’s (and many, many of our friends and coworkers) battle against breast cancer; to my dad’s (and the parents of many of our friends and coworkers) process as he fades away as this complex disease breaks the connections between more and more memories, I have become not only frustrated with suffering, pain, and having to watch both, I have been witness to the suffering and pain among the students I serve as a school counselor. I have become angry and sometimes paralyzed. This is my attempt to lift myself from the occasional stifling grief that darkens my days…from JCO Oncology Practice: An American Society of Clinical Oncology Journal, https://ascopubs.org/doi/full/10.1200/JOP.2017.026195

I tell you, finding encouraging quotes from doctors and nurses, nurse practitioners and physician assistants, and other medical personnel aimed at patients being treated for cancer – of ANY sort – was a bust! (No pun intended!)

It appears that they don’t have time to write down the encouragement that they obviously dole out on a moment-by-moment basis.

So, let’s look at the research:

“Although clinicians [the ‘front-line’ workers in cancer care, listed (by no means exhaustively) above] likely view kindness as a requisite component of providing cancer care, a number of stressors may interfere with their good intentions. The complexity of health care delivery systems, coupled with financial and institutional pressures, can create a barrier between clinicians and the care they wish to provide. Indeed, the care itself can be a barrier, as compassion fatigue is well described in providers who are routinely involved in emotionally charged conversations…”

So they MAY give encouraging support, but the brutal truth is that they aren’t getting paid to SAY nice things. They’re getting paid to do EFFECTIVE things in combatting cancer.

While the research doesn’t say much in the way of actual “encouragement”, it does lay out a plan for clinicians to follow when interacting with patients. This plan includes six “kindnesses”:

1) Deep Listening: clinicians take time to truly understand the needs and concerns of patients and their families

2) Empathy for the patient with cancer: expressed individually and by “the care culture”

3) Generous acts of Discretionary Effort: including timely care delivered by tools and systems that reduce stress and anxiety

4) Gentle Honesty: what is happening is conveyed directly in well-chosen, guiding words

5) Support for family: the physical and mental health of the supporting family (no matter what the constellation of the family is!) and their well-being are vital components of the care the patient receives

6) All of these work together as long as the clinicians are mindful both that the patients they’re treating are at a literal ALL TIME HIGH stress level, AND they understand that the clinicians themselves are also under stress

Of course this seems obvious when we’re sitting here in our own secure places, some people having sent their loved one Home, others at the very beginning of the long ordeal and are steeped in hope. But at the hospital, in the clinic, in the chemotherapy room, in the radiation suite…those are the times that the care and compassion of the CLINCICIANS can make a difference; the times when the family and loved ones can only look on in mute terror or stunned acceptance.

That is when the mindful clinician can step into both the family and the patient and create a calming, confident atmosphere that, while it CHANGES nothing, it feels hopeful, and it feels like someone knows what they are trying to do.

Resources: https://www.cancercare.org/publications/59-your_health_care_team_understanding_their_roles, https://cjon.ons.org/cjon/21/5/breaking-bad-news-evidence-based-review-communication-models-oncology-nurses, https://voice.ons.org/stories/word-choice-matters-when-caring-for-patients-with-cancer
Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg

ENCORE #164! – Vascularized Lymph Node Transfer (VLNTx) and Lymphaticovenous Anastomosis (LVA)!

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared initially in August of 2016.

“One procedure is a lymph-to-vein bypass surgery that involves connecting tiny lymph channels in the affected limbs to tiny veins, so blocked up lymph fluids have an outlet to flow into the circulatory system. These connections may be made in multiple locations on the affected limbs during outpatient procedure.

“Another option is lymph node transfer. It involves cutting a wedge of skin tissue containing lymph nodes from one area of the body, often the groin, and transplanting into the affected arm or leg. The transplanted lymph nodes are often able to clear lymph fluid from the affected arm or leg, resulting in partial or full reduction in limb swelling. The procedure requires several days in the hospital.”

“A new approach to treating lymphedema involves transplanting lymph nodes from elsewhere in the body to replace those removed as part of treatment…pioneer a method for selecting lymph nodes for transplant that could minimize this risk…Removing lymph nodes that drain the trunk does not generally cause lymphedema.”

In our area both VLNTx and LVA are being performed by at least one plastic surgeon. He notes however, “Surgery is a treatment option for a very small, selected percentage of the patients who have lymphedema…”

The next question is then, would my wife be one of that small, selected percentage? How is it paid for (ie: does health insurance recognize it as something important or as something cosmetic, that is, “unimportant”)?

To clarify, I should mention that there are TWO systems of fluid transfer in the Human body. The first one we are intimately familiar with called the cardiovascular system – that’s the one that’s connected to our heart and we see every time we cut a finger or scrape a knee. It transfers blood from one part of the body to the other, connects up with the lungs, and general keeps us from dropping dead in sixty seconds!

The lymphatic system is both hidden and for most of us, virtually undetectable. Our Medieval ancestors however, became acutely aware of the lymph system during the Black Death – the plague virus infects the lymphatic system and causes an horrific swelling of the lymph nodes. The nodes were also called “buboes” and the other name for the disease is the Bubonic Plague. Since then, we haven’t paid much attention to it.

It is the nodes, found at the joints – neck, armpits, hips, abdomen, and a few other places – that are removed when there is a suspicion of breast cancer. The nodes, when compressed by our movements, push the lymph from one place to another in the body.

Damage to the lymphatic system does NOT cause death in moments, rather the death from diseases of the lymph nodes and system cause death in terms of months, years, or even decades. The most significant disease to affect the lymphatic system – which also carries white blood cells to injured or infected parts of the body – was the Human Immunodeficiency Virus, more commonly known as HIV. This of course led to the scourge of the 20th Century, Acquired Immune Deficiency Syndrome or AIDS.

It is this parallel system that, when the nodes are removed, causes the buildup of lymph in the extremities. It causes lymphedema.

So there you have it. There is now SOME hope for treating lymphedema; there is now hope for patients whose doctors said, “Oh, don’t worry about injuring the arm we took the lymph nodes from. It’ll be fine…”

It wasn’t fine, and if I could, I would mention to that doctor exactly where he could PUT such saccharine, ineffective, unintelligent, gobbledygook…

UPDATE: 9/1/2018
There seems to be movement and study at the forefront of this surgical practice. The following from a recent article found at https://www.ncbi.nlm.nih.gov/pubmed/29355987: “CONCLUSION: VLNT followed by SAL can allow patients with late Stage II lymphedema achieve near normal limb size and eradication of infectious episodes. At follow-up, these desirable outcomes were maintained well after discontinuation of compression therapy.” (J Surg Oncol. 2018 May;117(6):1148-1156. doi: 10.1002/jso.24969. Epub 2018 Jan 22.)

UPDATE: 8/5/2021: “Gastroepiploic vascularized lymph nodes transfer and lymphaticovenous anastomosis followed by suction lipectomy. CONCLUSION: LVA, VLNT, and SL can be integrated together in a combined approach, in synergy to enhance the outcomes.” (https://onlinelibrary.wiley.com/doi/epdf/10.1002/micr.30641)
Resources: http://www.cancercenter.com/video/treatments-technology/vascularized-lymph-node-transfer/, http://www.advancedreconstruction.com/breast-reconstruction/lymphedema/?gclid=CIr0mNawvs4CFQYOaQodgKYPEQ
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

No POST TODAY! 34th Wedding Anniversary!

 The TWO OF US...