ALZHEIMER’S RESEARCH RIGHT NOW! #18: FDA Approves First In Vitro Test for Early Alzheimer’s Disease!!!

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: In VITRO test for Alzheimer’s markers in Cerebrospinal Fluid!

Up until recently, the only way researchers could detect biomarkers that indicated the accumulation of proteins that are likely the primary cause of Alzheimer’s Disease was to via a spinal tap – or examine the brain tissue after a patient had died. (Such a clinical way to state it…my father passed away three-and-a-half years ago from Alzheimer’s complications from a head injury he got falling off his bed…)

They could also shoot radiation at their heads as well, using Positron Emission Tomography (a PET scan). That’s not the number one choice of doctors and patients everywhere.

So now, the procedure known by the extremely clumsy name Fujirebio Diagnostics’ Lumipulse G β-Amyloid Ratio (1-42/1-40) Test. I’d call it the FDL Test…

But it doesn’t matter what it’s called as long as it does what it’s supposed to do. In this case: “Alzheimer’s is marked by the presence of plaques, or tangles, of beta-amyloid protein in the brain. We can test for them, but until now, the only way to do it was using a PET scan. The new test will do that as well, but requires a spinal tap (which involves inserting a long, thin needle into the lower back, and sucking up a sample of the fluid that’s in the sack around the spine.)

If there’s a strong suspicion of Alzheimer’s in a patient, the doctor can order the test. “The test measures two forms of the protein, referred to as beta-amyloid 42 and beta-amyloid 40. By comparing the amount of each kind, they get a ratio of the two forms of the beta-amyloid. Doing some calculations then can give an idea of whether a person is likely to have amyloid plaques. According to the FDA, using the new test gives results similar to what would be seen in a PET scan.”

Your average PET/CT scanner cost runs between 1.7 million and 2.5 million dollar. Needless to say, your average hospital in Mexico City isn’t going to have one; and if it does, it’s doubtful that the grandmother of a middle-income family would be able to afford it. The new test is much more affordable and will also be more portable.

So, you find out that the patient is likely to have Alzheimer’s. Then what?

“The importance of early diagnosis is essential to effective treatment. But there’s never been an approved biomarker test anyone could use. With it, more efficient clinical trials for new therapies might be developed, and patients, families, and their doctors might take action much earlier in the disease process.”

It’s not widely available yet, but that’s just a matter of time. The efficacy? Hmmm. If you have a spouse, sibling, parent, or grandparent suffering the early stages of Alzheimer’s, you’ll be holding your breath to see if this new test helps!

Resources: https://pharmaphorum.com/news/fda-approves-first-in-vitro-test-for-early-alzheimers-disease/, https://alzheimersnewstoday.com/2022/05/16/alzheimers-diagnostic-test-lumipulse-given-fda-marketing-permission/
Image: https://i.insider.com/605cf658106eb50019d05b11?width=1000&format=jpeg&auto=webp

ENCORE #184! – Chemo Killed Colds…and Other Weird Thoughts

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 in December of 2012 – almost a decade ago…

My wife’s down with a coughing, miserable, fever-full something-or-other, most likely the most recent form of the noravirus...

Working in an elementary school, she’s usually immune to whatever plague is making its way through the general population. But when something smacks into the school and it’s new, and the kids are staying home in droves…well, the staff usually gets it and it wipes them out, too.

So she’s down for the last day before Christmas Vacation.

It wasn’t like that during chemo. We’ve talked about it before. All of the normal illnesses seemed to give way in front of the onslaught of Taxotere (http://breastcancerreaper.blogspot.com/2011/10/whats-it-do.html), Adriamycin (http://breastcancerreaper.blogspot.com/2011/10/adriamycin-whats-it-do.html), and Cytoxan (http://breastcancerreaper.blogspot.com/2011/11/cytoxan-whats-it-do.html), grouped with Neulasta (http://breastcancerreaper.blogspot.com/2011/11/neulasta-whats-it-do.html).

But was that truth or only appearance?

Appearance, I guess (http://www.cdc.gov/cancer/preventinfections/patients.htm); though the FACT was that my wife got sick with garden-variety colds and infections less often while she was taking chemo and a reasonable conclusion would be that her blood would be highly toxic to anything else that got into her.

BUT…what about neulasta (the brand name of a compound called PEG-filgrastim)? If white blood cells fight off disease and neulasta BOOSTS the white blood cell count…

I did a lengthy search, but can find virtually NOTHING regarding people who have taken neulasta without having some sort of disease. While one of the side effects of using neulasta is a decrease in mineral bone density, there don’t seem to be any other consistent and wide-spread reactions (of course, there are isolated incidences of nausea, etc. One person even reacted by getting horrible pocks of dead and dying flesh (called Sweets Syndrome)).

It would be interesting to find out if there have been instances of people who took neulasta without having any sort of illness. Would they have a super-immune system? Would they sail through life without illness? Don’t know. The intent of neulasta injections coupled with chemotherapy is to boost the immune system’s response in order to ward of infections during the treatment. That’s what it did for my wife.

The question I have is that if it did that during chemotherapy when the immune system was weak; what would it do for a HEALTHY immune system?

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

GUY’S GOTTA TALK ABOUT BREAST CANCER #51…After Explant and Slow Going

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…

While the surgery is “long past”, and the two post-operation meetings went well; and the two drains were removed, recovery continues apace…if that pace was from the Ice Age.

We NEVER expected “instant recovery”. That’s what my mom expected when she had her hip replaced when she was 68…and it was so! She worked hard, did all the exercises, and was soon back to dancing across the stage of her beloved Wastebasket Review. She had it replaced a second time when she was 80-something. She was EXPECTING a quick recovery, but that never happened. She was in a huge amount of pain, she couldn’t handle MORE pain that came with doing the rehabilitative exercises, and she gave up. That was a contributing factor in her rapid decline…

So, my wife NEVER expected “instant recovery”.

What she got was surprises during recovery.

The FIRST surprise came when they told her “You won’t be able to do anything 

‘normally’ for another six months.”

WTH???? The doctor clarified that she’d be unable to lift large objects for that period of time. That the “large objects” included our almost-three-year-old-grandson was not what we expected. Fortunately he’s of the “always running at high speed until he conks out for a nap” kind of kiddo! He doesn’t USUALLY let us carry him anymore.

The second surprise was that she couldn’t life ANYTHING for the first two weeks; and she COULD NOT UNDER ANY CIRCUMSTANCES reach for anything over her head for some time – an indeterminate number that depended on several factors – rate of wound healing, condition of the skin as the wound healed, and “pain indicators”, ie, “If it hurts, don’t do it!”

Why?

Well, it involved, in my wife, after the removal of the implant and the scar-tissue capsule that had formed around it, “The muscle is often times sewn back down after an explanation. As long as the capsule is removed the muscle will scar and stick back down. There is raw tissue on both sides that the body will heal together.”

But, like all major surgery, it doesn’t happen FAST. Unlike the external incisions which form scabs to protect the healing injury, internal healing takes more time. It’s also the reason “drains” are placed under the skin to drain away any serous fluid that gathers post-surgery. Sometimes there is a small amount of blood as well. My wife’s physician’s assistant took out the tubes. The procedure was simple: a couple of stitches that held the tubes in place were snipped and the tubes pulled out without any real discomfort. My wife was fine with it at the time. She’s still experiencing some pain as she heals, but the doctor assured us that that is normal.

We’re not teenagers anymore! Not even in our fifties anymore. ALL injuries take longer to heal. My wife sometimes tries to do too much (I know, SHOCKING!), then has to back off an rest. Considering it’s been a GRAND total of nineteen DAYS since she was under anesthesia for three-and-a-half HOURS!!!!, I think she’s doing pretty good. She just wants to do MORE!

The doctor was pleased with the result, and now, like all good things, it will take some time to be back up to full speed!

[While there ARE YouTubes regarding explant surgery, I didn’t watch them myself as I don’t have the background to judge whether what they say is true or deals with explant surgery realistically. Feel free to Google them and judge for yourselves!]

Resource: https://www.realself.com/question/chico-ca-muscle-repair-explanting
(Answers the question: “How is muscle repair done when explanting?”); https://www.realself.com/question/new-york-new-york-drains-after-breast-implant-removal-collect-fluids-tissue (Answers the question:
Do drains placed in the chest after explant collect fluids and tissue?)
Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

ENCORE #183! – Lymph Node Excision, Mosquito Bites and “A Return To ‘Normal’”

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 first appeared in July 2012.

Here again, just in time for the season!

After my wife came home from a lymphedema expert at the hospital, I asked her how it had gone. The answer was that the swelling is receding slowly and that the pressure sleeve would be here soon.

She asked how often she would have to wear it, the doctor replied, “Forever.” She added, “Oh, and don’t ever get a mosquito bite. That’s one of the worst things in the world.”

*blink in startlement*

I don’t know about where you all live, perhaps someone lives in Arizona or New Zealand or Hawaii where mosquitoes aren’t a big deal. But in Minnesota, we (somewhat facetiously; but only SOMEWHAT…) call the mosquito our “state bird”. They are everywhere.

Granted, susceptibility to mosquito bites ranges from, say, me to say, my wife…

I get bitten, make no mistake. But my wife? Let me illustrate: we went to a recent fireworks fest celebrating one or another of some small town’s heritages. Great times! We sat in camp chairs set up in the middle of the street. The next morning, she showed me a pair of fist-sized welts, one on each side of her back that had been “exposed” (even though they were covered by T-shirt material!) where NUMEROUS mosquitoes had bitten her!

Take this little tidbit and add it to the doctor’s admonition and you get a recipe for me *blinking in startlement*.

So what’s the problem with mosquito bites?

First of all, let’s review the lymph nodes, which I talked about in depth here: http://breastcancerreaper.blogspot.com/2012/02/lymphedema-another-for-rest-of-your.html.

Excision means to remove or cut out. When the breast cancer was initially diagnosed in my wife, the doctors were very, very interested in how far it had spread. If it remained only in the breast, it was “less dangerous”. But if it had spread to the lymph nodes in the armpit (usually), the diagnosis was more terrifying and led to identifying the stage of the cancer. For a complete explanation, try this site:  http://www.breastcancer.org/symptoms/diagnosis/staging.jsp. They found cancer cells in the node and bumped the diagnosis from 0 to IIIB. This required them to removed lymph nodes – 21 in all and eventually the news that lymphedema would be a FOREVER concern.

Now to mosquito bites. Why are they such a concern? “...some insect bites probably are inevitable...treat them...to lessen the histamine effect, which can cause increased swelling in that area. Benadryl or hydrocortisone creams are two treatment options for insect bites. An ointment with aluminum sulfate as the active ingredient can also help decrease the effects of bites and stings...Treat an insect bite like any break in the skin on your limb at risk. Wash and dry the area completely and apply antibiotic cream to the area...take along a specialized first aid kit. The kit should include alcohol wipes to clean off any skin break, antibiotic cream for application on the skin, and bandages to protect the area…An insect repellent is a good idea...natural repellents, usually with citronella as the active ingredient, and these can be less detrimental to your skin...avoid putting insect repellent on your skin and then wearing a compression garment over it...”

So...if you live in Minnesota, WHAT THE HECK DO YOU DO!?!?!?!?!?

Deep breath.

Now you can be prepared for summer camping. As prepared as you can be!

Reference: http://www.lymphnet.org/lymphedemaFAQs/riskReduction/summerTips.htm

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

GUY’S GOTTA TALK ABOUT BREAST CANCER #50…Drain Pains, and Chest Wraps, and Pain Meds, OH MY!

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…

Well, it’s over.

The surgery, anyway. Now we’re coming up on the end of the first week, post-operative. It’s funny, the routine is so similar to the radical mastectomy, and the implant surgery, that it feels like no time has passed at all; almost like we’re replaying a milder version of the whole experience like a movie; and back at the beginning.

But 11 years ago, I was only 54 and had a lot more energy than I do now. OTOH, the kids were 19 and 23 when my wife was first diagnosed, they’re 34 and 31 now with spouses and kids of their own. Everything the doctors told us that would happen was mere speculation; a dream (or nightmare if, you will); and not truly comprehensible. We’d nothing to compare it to…

The implant surgery two years later, was also not truly comprehensible, but it lacked the raw terror of the diagnosis and demand for instant-if-not-sooner from the hospital and her doctor of the diagnosis and headlong rush to stop the monster from eating my wife; their mother, sister, sister-in-law, daughter-in-law, friend, neighbor....

During those days, we measured the time from the morning we checked into the hospital for the double mastectomy surgery to the end result as a matter of a few hundreds of hours. Then there was the benevolent abuse of chemotherapy, as hair vanished and weariness was the order of the day. Breast reconstruction two years later lacked the terror and seemed to be a good thing.

We find ourselves 11 years later, wondering what happened, and the images of my wife with chest drains and on pain meds (all the while worry that if she takes too many she’ll become an ADDICT!!!), chest wrapped in an ace bandage, and a visual inspection of the end result and being impressed by the neatness of the stitches; glad that it’s over…again. Those same intentional, healing wounds inspiring a shortness of breath in me and tears and countless phone calls from our kids, kids-in-law, and foster-kids.

And yet…and yet…when the doctor made the incision to remove the implants and their scar capsules, there was a faint fear that she would come out and say, “I’m sorry, but we found more cancer.”

But that’s NOT what she said. She said, “The surgery went very smoothly and we’re done a bit before we estimated we’d be done. She’s doing very well.” Those were the only words we needed to hear and so today I write from a place where my wife is steadily healing and growing stronger every day!

For those of you who are Christians, please join me in thanking God…He is worthy…please sing along with congregation of Christians in giving praise to Him: https://www.youtube.com/watch?v=fs7Kah6wnY8

Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

GUY’S GOTTA TALK ABOUT BREAST CANCER #49…Almost the Day For the Explant

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…

So, tomorrow, we report to the hospital for the explant surgery, aka implant removal surgery.

My heart still skips a beat, not because I’m ACTUALLY afraid, rather because of a vague sense of anxiety for the future.

After the original mastectomy, which was essentially an emergency once the breast cancer diagnosis was verified – medical care was reduced to countless visits to hospitals and clinics for pre-op, post-op, then chemotherapy consults, followed by weeks of chemo administered at a clinic across town, then the OTHER clinic visits for Neulasta to control what the chemo did to the did to my wife’s immune system, followed by more pre-sessions…

Two years later, we did another round because the breast cancer appeared to be gone…then my wife jammed her finger against a wall, a doctor said, “Don’t worry.” And then she had full scale lymphedema (which at the time wasn’t considered the business of the breast cancer community on any level, and was “just bad luck, oh well, thank you very much for your concern, *slam!*”).

And so today, after a revolution within the breast cancer community declared that lymphedema was real, but there was no cure for it and very little help…we’ve just learned to deal with it and learned to navigate the things we need to do.

Then the breast implant surgery, followed by ten years of pain…and now here we are. To say that the past eleven years have been a roller coaster begs me to point out that it was an amusement park roller coaster – it was a roller coaster IN AGONIZINGLY SLOW MOTION.

Tomorrow morning, we hope to enter the absolutely final step of this expedition Explant Surgery. What is Explant Surgery? “Explant Surgery and En Bloc Capsulectomy/Implant removal (or explant surgery) is an option for patients who are having problems with their breast implants, or who now simply prefer to be implant-free.

“The procedure removes the implant, usually along with part or all of the surrounding scar capsule. ‘En bloc’ capsulectomy involves removal of the implant and [scar tissue] capsule as one specimen... When performed alone, explant surgery is usually an outpatient procedure. The incision used to remove the implant is usually based on the patient's prior surgical history. The amount of capsule that needs to be removed in conjunction with explant surgery is [also] influenced by several factors (…diagnosis, surgical plan, patient preferences, etc), and is determined on a case-by-case basis.)”

As well, because there were two methods of doing the implant surgery – either UNDER the chest muscle or ON TO OF the chest muscle – hers will be removal from under the muscles. That requires the repair of the chest muscles and necessitates two weeks of extremely restricted movement, followed by two more weeks of limited lifting.

Two weeks from today, I’ll have more to say. As for now, “anticipatory stress” is all I have to deal with. And my wife is doing very well – she’s been baking, cleaning, preparing for the month of inaction, so she’s got things in a good perspective.

I’ll let you know more later!

Resource: https://www.bustle.com/wellness/explant-surgery-breast-implant-removal-experts, https://www.breastimplantcancer.org/treatment/#:~:text=What%20Is%20an%20Explant%3F,response%20to%20a%20foreign%20object.
Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

ENCORE #182! – When Are You Back Up To Full Speed?

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 in October of 2012…

Working full-time as a classroom aide for a kindergarten class is a draining experience even for the young and able-bodied! The classroom teacher is a young woman with loads of energy, enthusiasm and ideas – and SHE is often worn out at the end of the day! How could my wife possibly expect to keep up with her – as well as chasing after 25 five-going-on-six little kids, and closely monitoring and recording data on one child in the class who needs LOTS of supervision?

She works at the elementary school in the district with THE highest level of poverty. The neighborhood her school is in is primarily made up of apartments, has an airport, several vacant lots, one partially burned out gas station, suburban row houses all built within weeks of each other in 1956 and beginning to look their age. The environment is dilapidated, the school is dilapidated, the charter school next door to her school siphons off the best and the brightest leaving her school with more than its fair share of challenges.

She comes home exhausted every day and wonders when she’s going to feel better. Lymphedema is a concern still – nah, it’s downright worrisome. Yesterday she broke out in hives because she didn’t rinse out her compression sleeve well enough – because she was tired. Her feet are sore. Her knees and joints are sore (though that has gotten better since she’s gone gluten free) and she doesn’t remember feeling this crappy BEFORE the surgery, chemo and recovery.

So when WILL she feel like she used to?

In a transcript of a panel discussion on “Life After Breast Cancer” posted at http://secondopinion-tv.org/episode/life-after-breast-cancer, one of the panelists notes, “It's not possible to ‘flip a switch’ and immediately go back to a former life at full throttle. The body is in repair mode and women have to pace themselves. In fact, it may take a year or more to regain a sufficient level of energy and sense of well-being.”

Debbie Woodbury, commenting on a question at Talk About Health (http://talkabouthealth.com/how-long-did-it-take-for-you-to-feel-normal-again-after-breast-cancer-or-do-you-ever-feel-normal-again) points out: “Emotionally, it took even longer [than a year] to heal, but I will never be the same as I was before the cancer...no cancer survivor I've ever talked to...has ever told me that they were able to return to the normal life they had before they were diagnosed. It just doesn't happen. Cancer redefines normal.”

What exactly is a repair mode? Technically “recovery” has to do with the initial surgical recovery, but, “After your cancer treatment, as a cancer survivor you're eager to return to good health. But beyond your initial recovery, there are ways to improve your long-term health so that you can enjoy the years ahead as a cancer survivor. The recommendations for cancer survivors are no different from the recommendations for anyone who wants to improve his or her health: Exercise, eat a balanced diet, maintain a healthy weight, avoid tobacco and limit the amount of alcohol you drink. But for cancer survivors, these strategies have added benefits. These simple steps can improve your quality of life, smoothing your transition into survivorship.”

This is recovery.

“But doctor, will I ever be able to play the violin again?”
“Of course!”
“That’s amazing! I never played it before the surgery!”

Ba dum bum. Everything people have blogged leads me to believe that the repair mode of post-cancer recovery is long and difficult. Of COURSE you feel better than you did immediately after surgery. It seems like things are getting better fast. But that’s different. Cancer is invasive and if you’ve undergone a prolonged chemo or radiation therapy, then your entire body has been weakened – from head to toe.

“You may have permanent scars on your body, or you may not be able to do some things you once did easily. Or you may even have emotional scars from going through so much. You may find that others think of you differently now - or you may view yourself in a different way…”, “...those who have gone through cancer treatment describe the first few months as a time of change...finding out what's normal for you now. People often say that life has new meaning or that they look at things differently now. You can also expect things to keep changing as you begin your recovery. Your new ‘normal may include making changes in the way you eat, the things you do, and your sources of support...follow-up care. Should I tell the doctor about symptoms that worry me? Which doctors should I see after treatment? How often should I see my doctor? What tests do I need? What can be done to relieve pain, fatigue, or other problems after treatment? How long will it take for me to recover and feel more like myself? Is there anything I can or should be doing to keep cancer from coming back?”

All of this – and MORE – are things to factor into recovery.

The answer to the ultimate question, “So when WILL she feel like she used to?” may not have a clear or solid answer. I suppose the best response might be, “e) All of the above”...

Resources: http://www.cancer.gov/cancertopics/coping/life-after-treatment/page1/AllPages