You and the statistical averages. - Advanced Prostate...

Advanced Prostate Cancer

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You and the statistical averages.

AlanMeyer profile image
58 Replies

A lot of times we read that patients with cancer will, on average, live X number of months after treatment Y. If X is a small number, it can be pretty discouraging.

Although I think that we need to be realistic and understand that we're most likely to come out somewhere near the average, we shouldn't assume that we can't do better. We might do better if:

1) We're lucky. No doubt about it. Luck is a factor.

2) We get the best care that we can. The famous PCa specialist Dr. Charles "Snuffy" said that if all patients were treated according to best practices, there would be 3,000 prostate cancer deaths per year in the U.S. instead of 30,000. I think he was exaggerating to make a point but I do think his point is well taken. If you have advanced prostate cancer, find the best medical oncologist available to you. These doctors often (though not always!) practice at the teaching and research hospitals where a doctor must be a scientist as well as a practitioner.

See: cancer.gov/research/nci-rol...

3) Keep yourself informed about prostate cancer. If this kind of research just befuddles and depresses you, maybe one of your family members can help. Don't get sidetracked by the million quacks on the Internet who offer to cure you with Essiac tea, special herbs, or cottage cheese (yes, they do that.) Stick with the scientific studies published by the medical schools and cancer institutes. And don't think that you know more than the experts because you read an article. You don't. But it's good to know something so that you can ask intelligent questions and make suggestions in your own treatment. You should always write down questions before you see your oncologist and write down or record answers while you're with him. Again, a family member can help with that.

4) Keep up your spirits! You aren't dead until you're dead. Until then you're still alive! You're still able to enjoy your family and friends, still able to chuckle at a funny movie and feel the pull of your favorite music, still able to read a good book, and still able to take an interest in and help others. That may or may not enable you to live longer but it will absolutely make the life you have left more worthwhile.

Here's hoping that everyone will live long, beat, and rewrite those averages.

Alan

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TonyMarshall profile image
TonyMarshall

Hi Alan

Thanks for your practical wisdom.

Regarding luck: most of us are alive today because we're lucky enough to have benefitted from our fathers' and uncles' and their friends PCa that attracted much investigation, research and growing success in treatments post WWII.

That said, each person's environment, experience and cancer is slightly different and runs a slightly different course (I have been assured by my oncologist), so as much as I am anxious about prognosis, I realise that all I have is now. I hope for many nows! I have been told I am now above average! :-)

I've had to settle that treatment of my Stage 4 PCa (diagnosed 4 August 2011 at 55) has a finite element to it, but in the mean time, adding to the cocktail of treatments is keeping me reasonably active, working as a school headmaster, and enjoying what to me is a "normal" life of serious sweats, depleted strength and the usual symptoms. Oh, yes, I have to remind myself that the inconvenient and embarrassing elements of my "normal" are still things I can be grateful to experience. Ultimately, I will not have the privilege of these (less than ideal) experiences, and of waking up to keep trying to make a positive difference in another very interesting, challenging Cape Town day! The fairest Cape in all the circumference of the world, said Sir Walter Raleigh.

Absolutely right about purveyors of snake-oil, thanks, Alan. One's emotional state is sometimes depleted, and unless there is too much of a financial cost involved, it may not be only the patient's physical well-being involved when submitting to the best intentions of those who care about us. They are hoping, just as we hope, that quality of life and length of life can be enhanced, so actually trying alternatives in conjunction with (as opposed to abandoning) mainstream treatment may do little harm and actually help the family and friends emotionally.

Thanks again for your thoughts - they have helped me to gather mine!

Blessings and peace

Tony

Jeff54 profile image
Jeff54 in reply toTonyMarshall

Well said Tony!

Dan59 profile image
Dan59 in reply toTonyMarshall

Tony, Another great read, keeping active, doing what you always did and not letting cancer stop what you like to do and where you want to live that is a great way to keep things normal, Not to mention being in a beautiful area. Great Post today, thanks,

Dan

Daddyishealing profile image
Daddyishealing in reply toTonyMarshall

I agree. See Sloan Kettering website, as theyou have done extensive scientific research and do recommend adjuvant integrative therapy, not just one or the other which just makes very good sense.

Scruffybut1 profile image
Scruffybut1

I and so many more of us agree. I was told my median survival from diagnosis was likely to be 67 months if my treatment plan worked. My Oncologist completely discounted the fact that on her admission the 2/3 years I had already lived pre diagnosis with PCa (given the state of my PCa + mets etc). 'No David, from diagnosis not from guesswork.' So another 40 months to go BUT my response to meds has been so good she's looking at anther couple of years if not more. I am bloody determined to crack on for 10 more years. We all need something to look forward to, don't we. Watch this space and join me. David.

Rogersw profile image
Rogersw

Nice positive bit of writing guys. All we can do is follow the experts and live positively and sensibly enjoy our lives after all generally we are relatively more able to do that than some illnesses. I am just hitting 70 and three years in Gleason 8 stage 4 no chemo as yet mind.

BigRich profile image
BigRich

Alan,

Very well said; in 1998 the doctor told me in so many words, we are going to have to work hard to get you five years.

Rich

Neal-Snyder profile image
Neal-Snyder in reply toBigRich

Great work staying alive, Rich. And/or a really crappy thing for your doctor to say. I think it's both. I was diagnosed way late after my first PSA test in 2003 (60.7). After my RP & my EBRP with lupron both failed quickly, I spoke with several oncologists, who said I had as little as a year to live. My urologist was the most encouraging, saying that men generally have 6 to 13 years after diagnosis according to a study, although I assume most of them were in better circumstances than mine. I've responded well to meds, taken supplements & prescription Chinese herbs, eaten wisely, had fun, gotten good sun exposure at home & while traveling, been active, gotten massages & acupuncture, etc. And here I am 14 years past my diagnosis & nowhere near death.

Neal

BigRich profile image
BigRich in reply toNeal-Snyder

Neal, when you say eaten wisely does that mean a plant based diet or do you include moderate amounts of chicken and fish? How do you feel about red meat? Are your portions of animal protien 3 oz. or 6 oz, per day?

Rich

Neal-Snyder profile image
Neal-Snyder in reply toBigRich

That's a really good question, Rich. I may not have been as wise as I thought. I've eaten fish or seafood every day, often at 2 meals, with no concern for portion size. A lot of it has been wild Alaskan salmon, but most of it hasn't. The fish I've had at home has all been wild caught, but I eat a lot of spicy Asian food from restaurants both at home & in Asia. On the bright side, often this involves pieces of fish in a sauce with veggies, rather than slabs of fish. Recently, knowing that Patrick eats some meat, I've been more likely to taste meat that my wife is eating. Damn, she had some delicious Thai pork!

It was only when I read Patrick's post today & he said he's not a vegan, but he keeps the size of his meat & fish portions down to avoid having too much phosphorus, that I realized I needed to change my evil ways. I wrote questions to Patrick about whether some things are better than others. & I'll be very interested in his answers.

I have eaten lots of veggies & fruits every day. My big bowl of oatmeal with non-dairy milk for breakfast includes a cup of blueberries, which is recommended daily for cancer patients. I buy them frozen, so they're cheaper & available year-round. And I just read that frozen blueberries are even better for us than fresh.

Shortly after I was diagnosed, a friend sent me an article by Neil Shapiro, M.D., saying that the best diet to avoid or fight prostate cancer was no meat, fowl or dairy. I got the idea elsewhere that fish was good, & when I found out that the organization Shapiro heads, the Physicians Committee for Responsible Medicine, was an animal rights group, I realized why he'd been silent about fish. Later, I saw an integrative oncologist who got me to avoid sugar & breads, etc., that easily convert to sugar. But I know there's sugar in a lot of my Asian meals, although I avoid sweet & sour, & other more sugary dishes.

I'm not being concise here, but the idea is that I've never read stuff about portion size. Have you read or been told that some say 6 oz. is OK, but others say limit it to 3 oz.?

I haven't been interested in chicken since I started this diet, & thought I didn't like it anymore. Then my wife got a spicy chicken dish in a Chinese restaurant in Berkeley, & said it was possibly the best chicken she'd ever had. I tasted it & it was fabulous.

I haven't ordered meat or chicken for myself, but I've wondered recently if I should let myself order a delicious pork dish instead of fish sometimes, or eat it if my wife cooks it.

I've lost weight that I didn't need to lose eating as I do. Have you been able to keep your weight up without eating stuff that isn't good for us? How have you done it? I know I should eat more savory sweet potatoes, which I love & they're good for us, & more potatoes, which are neither good nor bad for us.

Neal-Snyder profile image
Neal-Snyder in reply toNeal-Snyder

Rich: Patrick answered me--very helpful--& I asked some more. See his post "Fibroblast."

Also, I don't think I've been THAT evil most of the time. I asked my wife how much fish there was in the curry I ordered for dinner tonight, & she said 3 oz., maybe 4.

BigRich profile image
BigRich in reply toNeal-Snyder

Neal,

One of the pleasures in life is eating and drinking. I drink nonalcoholic beer, one bottle a day. I don't eat red meat, and I limit my chicken to 6 oz. a couple days a week, and my fish to twice a week, 6 oz. I eat a lot of veggies, and some fruit. By design, I lost 100lbs. and I have 25 lbs. I need to lose. I avoid surgar; I drink spring water, carbonated water, and coffee, black.

Rich

Neal-Snyder profile image
Neal-Snyder in reply toBigRich

Rich,

I love eating & drinking. I was drinking a beer or ale a day because I love the taste. But just recently, a specialized physical therapist working with me in the wake of a urodynamic evaluation suggested that at least for now, I stop the beer (boo-hoo) & cut back a bit on my white tea, because they irritate the bladder. I always drank black coffee (Peet's French Roast is my favorite) until I switched to green & then white tea as a cancer fighter. Congrats on losing so much weight! You sure aren't as big a Rich as you were! Various fruits, especially the bright colored ones, have various cancer-fighting nutrients. I'm lucky to live in California. Where are you?

Neal

BigRich profile image
BigRich in reply toNeal-Snyder

Neal,

I drink nonalcoholic Beck's beer, for I like the taste. I live in Connecticut.

Rich

Neal-Snyder profile image
Neal-Snyder in reply toBigRich

Rich,

Becks & Bohemia are/were my daily beers. Sometimes Racer 5 or another ale. Does your Beck's taste the same as the standard version? That would be very cool!

I guess you don't have abundant fresh fruits there--or do you?

Neal

BigRich profile image
BigRich in reply toNeal-Snyder

Neal,

Does your Beck's taste the same as the standard version?

I think so; I eat more veggies because I only can eat so much food. Also, I know that fruit has complex surgar, but it is still surgar.

Rich,

Neal-Snyder profile image
Neal-Snyder in reply toBigRich

Rich,

I look forward to trying non-alcoholic Beck's. Come to think of it, when we go to the supermarket here in Chiang Mai tomorrow, I'll see if they have non-alcoholic Singha, my favorite Thai beer.

From what I've read, the sugar in fruit is not a problem for us guys with PCa, & fruits have PCa-fighting compounds. And aren't they saying sugars don't cause weight gain? I do understand you're limiting your total food consumption.

All of this stuff is so complicated. Here I am retired, & I feel like I'm back in school.

Neal

BigRich profile image
BigRich in reply toNeal-Snyder

All of this stuff is so complicated. Here I am retired, & I feel like I'm back in school.

Ain't that the truth!

Rich

Daddyishealing profile image
Daddyishealing in reply toBigRich

Wow, rich stand proud. On the basis of illness in general and proactive Ness your diet is well mastered kudoos. I'm curious why Noone juices vegetables? Any reason since you can get slot more on at a cellular level?

BigRich profile image
BigRich in reply toDaddyishealing

I neglected to add, I drink V-8 low sodium veggie juice, 24 oz, a day.

Rich

in reply toNeal-Snyder

I've studied at least 60-80 books and at least that many peer-reviewed reports on nutrition, for many purposes including sports endurance, cardiovascular health, lipids management, strength building, weight management, specific medical issues, cancer prevention and management, supplements, aging, prediabetes reversal ... just about any aspect of our lives nutrition affects. My bottom line (but still sometimes debatable) conclusions include:

• There's almost no proof any of it affects cancer once we get it.

• It might slightly affect who gets cancer, but at our age that ship sailed decades ago.

• OTOH, it can have very dramatic effects within weeks, sometimes days, on many other aspects of our health.

• There is a Mount Everest of BS out there about what we should eat or avoid, it takes thousands of hours to sift through it (unless, of course one chooses and believes the right book -- whatever that may be -- early in the process), and the government and most doctors are far, FAR behind the power curve of knowledge. I have read more just today about nutrition than most doctors are taught in their college careers.

• I eat what I eat for many reasons, but cancer is pretty much the least of them.

• Just one of many examples is my lipids profile. It was WAY out of whack for decades, and all my MANY doctors (I moved around a lot in and after the Air Force) offered nothing but onerous drugs for the problem. I read a book, tweaked my diet accordingly, and just one of many very distinct and prompt benefits was a lipids improvement ... in just weeks ... that dropped my carefully-selected doctors' (and two idiot cardiologists') jaws. That alone did more for my health in a month than a decade of unproven cancer nutrient hacks is likely to do.

in reply toBigRich

Mine said the same thing, but behind my back. They didn't admit it until I sailed past 9 years still undetectable. The doc who had removed my prostate whispered quietly, "I think we could almost use the "C" word for you".

"Thanks a lot, Dan. Same to you."

"No, not that; I meant "Cured""

I knew that.

OTOH, I overheard a gaggle of neurologists down the hall debating whether I'd survive through the weekend, pending my ultrasensitive brain MRI results. They were shook up when I walked over and insisted on joining the conversation. "YOU HEARD THAT?", one of them said. I'll bet they walked farther down the hall next time.

That was in the early '90s, before I convinced them that my problem was Meniere's disease, not brain stem emboli.

BigRich profile image
BigRich in reply to

"That was in the early '90s, before I convinced them that my problem was Meniere's disease, not brain stem emboli."

The doctors thought I had Meniere s disease. I thought I had an inner ear infection. That year the attacks were blast off. A terrible year not knowing when an attack would come. It finally resolved itself.

Rich

bdriggers profile image
bdriggers

Well composed and accurate post. Thank you Sir.

scarlino profile image
scarlino

Thank you Alan! I needed that this morning. Great advice for all.

Pennysue1 profile image
Pennysue1

Wonderful advise - thanks

Question- has anyone tried the Provenge get? My husband mike will start that next - tried zytiga- it did not help - luckily our Medicare with a supplement covers it - mike has to have a catheter put in soon for this treatment

in reply toPennysue1

I just finished the 3x Provenge. Nothing obvious.

Daddyishealing profile image
Daddyishealing in reply to

But martin, doesn't it take much longer to work than aggressive treatments and isn't it expected that differences would be subtle and slow? I thought that was the proper route

in reply toDaddyishealing

Yes, that is correct. I did not expect to see anything obvious, and I have not experienced anything. I have heard that a small fraction of people do see a PSA decline. My PSA was not (even) measured, and wont be till Feb 9th.

My hope is that it is working against the circulating tumor cells, but those are not being looked at or measured.

skateguy profile image
skateguy

Well written except your statement on quacks. Let’s face it, if cottage cheese could cure cancer, no one would invest the money to get FDA approval, because it isn’t patentable and therefore not profitable. My point is you need to be open minded and conduct your own research and realize our medical system/industry is motivated by profit first.

I’m sure there are some quacks out there trying to profit on disparate people, but I do not believe they are all quacks. I also believe most, if not all, doctors have good intentions, but their training is totally focused on drugs and surgery.

I found the following video very interesting and you may too. One person discusses how our medical industry evolved.

youtu.be/gR8SQzCJK0Q

AlanMeyer profile image
AlanMeyer in reply toskateguy

I wasn't able to launch the video. When you watch it on YouTube you'll probably see a link of the form .../watch?v=xxxxxxxx.

If you could let me know the xxxxxxxx I may be able to get it. Thanks.

Alan

skateguy profile image
skateguy in reply toAlanMeyer

Ooops. Sorry, I edited the above post

AlanMeyer profile image
AlanMeyer in reply toskateguy

skateguy,

I made it through the first 23 minutes before I gave up. It was hard for me to watch.

Assuming that Ty Bollinger's family history of cancer and death due to treatment is accurate, and understanding that he has no scientific training himself, I find his interest in alternative medicine to be completely understandable. But it's still wrong!

The alternative medicine people that he interviews have different axes to grind, different theories of what cancer is, and if one of them is right, the others are definitely wrong. Take for example G. Edward Griffin, the first man he interviewed. Griffin is a proponent of laetrile - a compound investigated in clinical trials that was found to have no benefit whatever. He also has a very weird theory of what cancer is. He imagines that experts all disagree about what cancer is - which isn't true. To the best of my knowledge, experts all agree that cancer is a process of runaway cell division plus survival of cells outside their native habitat, i.e., metastasis. At a high level, the cause of runaway cell division is generally the mutation and disabling of genes that prevent cell division, or genes that cause the death of cells that have mutated, or the over transcription of gene products that promote cell division. The causes of mutation are various, from inheritance, to exposure to carcinogens like tobacco smoke, to radiation (including too much sunlight), to certain viral or bacterial infections, to one of the most common causes of all - aging.

Each one of these causes is understood in vast detail. Pick up a copy of Bruce Alberts et. al.'s _The Molecular Biology of the Cell_. It's the standard textbook of molecular biology, the current edition of which runs to 1464 pages! That's just the basics, the elementary school, as it were, of the cell biology needed to understand cancer. Statements made in the video by the likes of G. Edward Griffin, or Robert Scott Bell, would be laughable if people weren't dying because they imagine these guys to be authorities.

Bell is a homeopathic "doctor". Have a look at the Wikipedia article on homeopathy. Here is the first paragraph from that article:

"Homeopathy ... is a system of alternative medicine created in 1796 by Samuel Hahnemann, based on his doctrine of like cures like (similia similibus curentur), a claim that a substance that causes the symptoms of a disease in healthy people would cure similar symptoms in sick people.[1] Homeopathy is a pseudoscience – a belief that is incorrectly presented as scientific. Homeopathic preparations are not effective for treating any condition;[2][3][4][5] large-scale studies have found homeopathy to be no more effective than a placebo, suggesting that any positive effects that follow treatment are only due to the placebo effect and normal recovery from illness.[6][7][8]"

We're not talking about unproven theories here, we're talking about disproven theories, theories that are known to be false.

One of the crazy things about this is that these guys say that the standard medicine doctors are making big bucks by promoting false treatments. Then have a look at Bell's website, or at Griffin's books and movies. Who do you think is more aggressively promoting his services and making the most money, your oncologist or one of these two guys?

I know that some people reading this will be convinced that I have been won over by the evil forces of the dark side but the truth is that I too agree that there are many terrible things wrong with the drug companies and the way that drugs are developed, promoted, and marketed in the U.S. I too agree that we could have better and cheaper drugs than we have if certain regulatory changes were made. I too agree that there are unethical doctors who care more about money than about their patients and we'd be better off if some of those guys left the profession. But I have met some of the brilliant scientists who do cancer research (I used to work as a computer programmer at the U.S. National Cancer Institute) and I have met practicing physicians that I have trusted with my life. I'm convinced that, for all its flaws, scientific medicine is the only path forward in the treatment of disease. The wishful thinking of men like Bolinger, and the deceptive salesmanship of men like Griffin and Bell, do not offer us a way forward, only a way back to the medicine from before the great discoveries of the scientific era.

Alan

Neal-Snyder profile image
Neal-Snyder in reply toAlanMeyer

In contrast, we have the research-based nutrition & supplement information on this site from Patrick O'Shea & others, & research-based integrative oncologists (& other scientists) like Donald Abrams at UCSF. See Donald Abrams & Andrew Weil, Integrative Oncology (2nd ed. 2015).

skateguy profile image
skateguy in reply toAlanMeyer

What did you think of the discussion starting at 18:30? As I stated above, we all need to be open minded and conduct our own research and realize our medical system/industry is motivated by PROFIT first. It's the system that is at fault, not the doctors. If there was a supplement, for example, that had a better rate of curing cancer than let's say chemotherapy, do you believe that some company would spend the money necessary to get it approved by the FDA? Of course not, as it is readily available/inexpensive. And, if the FDA does not approve this supplement, doctors can not prescribe it, as that would not meet the definition of practicing medicine. This is a flaw in the system. Again, my point is to be open minded.

in reply toskateguy

Re:" It's the system that is at fault, not the doctors."

It's both. If they had 36-hour days OR greater motivation, they could fight the system from within. It has been the rare doctor, in my experience, who would even LOOK at a study or 50 pages condensed from 100 studies -- no exaggeration -- I offered them. "Well, that's not what I was taught."

"OF COURSE NOT, you idiot. You went to school 30 years ago, and things change! Besides, your beliefs were disproved 60 years ago. You're fired, and should lose your license to practice." ... is what I thought.

What I say is actually "Thanks for your time. Bub-BYE."

And what I DO is fire his lazy butt and go find a doctor willing to keep up with medical "advances" ... such as "Don't mix grapefruit juice and statins, ESPECIALLY if you use your muscles hard",

"It's h pylori, not stress, that causes ulcers",

"Sat fat improves our lipids and high cholesterol does not cause heart disease",

"Low fat diets are neither healthy nor a good way to manage our weight",

"High cholesterol is not harmful for men our age and significantly extends women's longevity" and

"Aerobics does not work. In fact, it has several negative impacts on our health."

I've filed formal complaints on only two doctors, but that was a waste of time in the VA system. Now I just don't use such doctors.

skateguy profile image
skateguy in reply to

I too have presented studies to doctors and each one quickly dismissed it. Let's face it, to most doctors it's just a 9-5 job. I'm on doctor #6, over six years, and should look for number 7, but wants the point, the majority go by the same playbook. I too live in VA. I've been to UVA, A local Oncologist, John Hopkins and now INOVA. When I found out about Snuffy Myers, who appears to think outside the box & cares, it was too late as he wasn't taking any more advanced cancer patients. Good Luck

in reply toskateguy

My "VA doctors" were in four different Veterans Affairs hospitals in New Mexico and Washington, but the problem is by no means confined to the VA. Granted, doctors know a hundred or a thousand times more than I do about the body at a molecular and chemical level, but many are woefully ignorant about many of the practical aspects of medicine. For example, I chose my PCP from a short list of board certified Internal Medicine specialists. I fired her when 1) I couldn't make her understand that a PSA of 3.9 is NOT "FINE" for a man whose G8 cancerous prostate was removed 10 years ago and 2) she was totally unconcerned about my having been on a PPI for 20 years.

"Well, do you still have GERD symptoms?"

"No".

"Well, it's working, then. Why stop?"

"Because it can contribute directly to stomach cancer, is suspected of promoting prostate cancer, is intended by its manufacturer to be limited to weeks, impairs the digestion of many essential nutrients, inhibits the entire digestive process from stomach to large intestine, our stomach acid is there for a reason (actually MANY reasons), and much more. Here's a research bibliography of dozens of studies and 8 books on just that topic written by eminent gastrointestinal physicians."

"That's OK. I gotta go. Just don't stop your PPI; the rebound will be far worse than your GERD ever was."

I left. I quit my PPI. I haven't had a twinge of GERD or a bad upper endoscopy in the years since then.

Arrogant bastards. It's M.D., not G.O.D.

AlanMeyer profile image
AlanMeyer in reply toskateguy

This is in response to Skateguy's request for my views on the Ty Bollinger video starting at minute 18:30. A guy named Robert Scott Bell is giving the standard line that the FDA (he calls it the "Fear and Death Administration") is promoting dangerous drugs designed only to make money for the drug companies.

I'll begin by defending the FDA. The FDA has regulations that require clinical trials to demonstrate both the safety and the efficacy of any drug submitted for approval. They require that the results of the trials be reviewed and approved by a panel of independent experts and that detailed reports on the outcome of the trials be published and available to anyone. This process is open, above board, anyone can read about how it works. See:

fda.gov/drugs/resourcesfory...

Do they make mistakes? I'm sure they do. But if there's a better way to protect us from quacks and phoney drugs, I'd like to hear what that is.

"Doctor" Bell promotes homeopathy, a theory developed in 1796 by a guy working before we knew anything about even the simplest chemistry. Homeopathy has been clearly demonstrated not to work and, by the basic laws of chemistry, can't possibly work. The inventor didn't know any better. The science wasn't available yet. Bell doesn't have that excuse. See:

en.wikipedia.org/wiki/Homeo...

Bell, Griffin, and others of their ilk are making money by promoting known false theories. And these are the guys that are telling us that the drug companies are bad!

I agree that there are unscrupulous doctors and drug salesman. That's why we have the FDA and the medical licensing boards. There are problems with both of those institutions, as there are with all institutions run by humans. But the solution is not to empower criminals like Robert Scott Bell to dismantle the best thing we have and release a free-for-all, anything goes set of "alternative" medical practitioners on the public.

As for the profit motive and the fact that non-patentable compounds aren't investigated by the drug companies - I think that's a perfectly valid point. But it's obvious that people like Robert Scott Bell aren't investigating them either. They promote their phony cures with no research whatsoever. The solution to the problem is probably to have non-commercial, government sponsored research into non-patentable medicines. There is some of that, but maybe there needs to be more.

Alan

Daddyishealing profile image
Daddyishealing in reply toAlanMeyer

So , turkey tail is a supplement which has been used as other mushroom compounds for cancer and illness, does that mean it was quakery but now that the nih proves it's efficacy, now it's not. I'm not a fan of homeopathy, but alternative medicine such as acupuncture does have research benefits behind it as does meditation, ,and studies are done on supplements and some are being picked up by the nih, but to dismiss all as equivalent to bell narrows possibilities. I alone have tried 100s of supplements for autoimmune and chronic conditions. Many did not help, and some continue to, and others work for that period ones body is going through. But systemic enzymes, acidopholus, magnesium , msm, natural greens, chromium picolinate, tumeric with pepper are of use in pain and chronic ailment. I'd venture to argue that no these may not help everyone but they are not harmful. I believe in complementing medicine not dismissing it no matter how crooked big pharmacy is . But some are dismissed as quacks doing iv therapies and oxygen therapies etc, and I've seen people get better quality if life than with just western care. My dream would be that mds get trained in integrative therapy,which if you research you can see Sloan Kettering, a top cancer hospital, is in fact doing .

AlanMeyer profile image
AlanMeyer in reply toDaddyishealing

Bear in mind that many of the alternative medicine treatments have actually been tested and been proven to be ineffective. The video I criticized showed two practitioners - G. Edward Griffin, who advocates laetrile, and Robert Scott Bell, who advocates homeopathy. Both laetrile and homeopathy have been tested and it is known that neither one works.

Bear in mind also that a lot of the alternative practitioners, such as "Doctor" Bell, aren't doctors at all. They've had no medical or scientific training, no lab experience, no experience treating real patients and following them up.

So a guy comes to you via the Internet and says, take this homeopathic enhanced parsley extract. It will cure your cancer. You know nothing about the guy. You can't find any scientific research to back up his claims for parsley (homeopathic or otherwise.) What do you do?

He could be right, but I think the wise course of action is to say: Thanks, but no thanks, and go find a different web page to read.

Alan

Daddyishealing profile image
Daddyishealing in reply toAlanMeyer

Alan , you font believe in scientific medicine as integrative therapy? It seems avoiding it all because of a few quacks doesn't help, because hey if there's power proven in something not yet slapped with a drug patent, why not? It seems some of the best hospitals are starting to imbrace integrative care. I wish my dad would

AlanMeyer profile image
AlanMeyer in reply toDaddyishealing

The reason I avoid "alternative" medicine is that it's unproven. If it's at least proven to be harmless, then I'm not opposed to it as long as it's a supplement to, and not a substitute for, evidence based medicine.

However I do think people should beware of the alternative practitioners. The great majority of the ones I've seen on the Internet are blissfully ignorant of basic science but are quick to criticize real scientists and happy to sell you books or pills that no one has examined or tested - or when they have, have found to be useless at best.

Alan

in reply toAlanMeyer

RE "If it's at least proven to be harmless, then I'm not opposed to it as long as it's a supplement to, and not a substitute for, evidence based medicine."

Where does that leave us when even the U.S. government, the Mayo Clinic, and almost every medical school still preaches and teaches such long-disproved and harmful notions as low-fat diets, extensive cardio exercise, and artificially keeping our cholesterol low? How about the frequently devastating and VERY common cognitive impacts of non-curative but Standard of Care cancer chemotherapy such as ours?

And although Leibowitz calls himself a maverick, all he's really saying is that he is ahead of the mainstream in applying the same drugs as the Standard of Care demands, but in more effective blends and ways (Medicare approves it). My definitely-mainstream local medical oncologist, head of the hematology/oncology dept at a large hospital system, is very willing to administer Leibowitz's protocol. He says he's used parts of it with many of his patients, just not the whole formal protocol at once. I found that quite encouraging, in fact one of several important decision factors in my choice.

Daddyishealing profile image
Daddyishealing in reply toAlanMeyer

Look at the qualifications of the practitioner, their medical backgriund, and interview each one. Some yes are money hungry and slap their names on vitamins etc and add to orotocsll, others are brilliant doctors who see the benefit of adjuvant treatment. There are many aspects of the brain we do not understand, and people who have healed practicing outside the box. In advanced pca I'd never recommend bot utilizing both, but it's simply not all same oil. You are only reading main stream government studies and the government as we know does not want us to know snything. In the end I think it's possible to be your own natural practitioner and to demand some tests be run that can help but are outside insurance. Dismiss some as wuacks, not the entire firld. There are many who devote their lives to it because they truly want you help and science foes back the use of some supplements. . A cure all panacea..no of course not disease is multilayered and should have a multifaceted aporoach. Just look back to when certain drugs were not considered drugs. Chemo is a plant based therapy. Before patent it would have been quakery that some plant can kill cancer cells. But I truly respect your highly educated research and opinion.

in reply toAlanMeyer

I assume that "for all its flaws, scientific medicine is the only path forward in the treatment of disease" does not exclude cutting edge maverick physicians who beat the big institutions to the punch. I'm sure there are countless examples like Barry Marshall and Robin Warren (Nobel Prize despite excoriation from the medical establishment) who discovered the REAL cause of ulcers, Robert Atkins who revived long-established nutrition knowledge to debunk the low-fat diet, and probably hundreds more examples of Davids slaying Goliaths. I would love to still be around when the debates over the causes of cancer and heart disease are settled.

AlanMeyer profile image
AlanMeyer in reply to

You and I have discussed these issues in another forum.

Yes, I agree that there are maverick physicians who beat the big institutions to the punch, though it's very difficult to figure out who they are - if it weren't, they wouldn't be mavericks.

I also agree that the science of cancer, as with much of medicine, still has a long way to go before it is anywhere near complete.

I think there are at least two important considerations when deciding on an unconventional treatment. One is, does it really make scientific sense - something that can be hard, even for an experienced scientist, to determine. Another is, is there an important problem with the conventional therapies that makes it worth trying a less proven approach?

I know from your postings on the other forum that you've devoted a great deal of thought and research to those considerations and that you have your eyes wide open. I know that you know the risks and are prepared to accept the consequences of your decisions.

All I can do is to wish you the best of luck.

Alan

AlanMeyer profile image
AlanMeyer in reply toAlanMeyer

I wrote:

"Yes, I agree that there are maverick physicians who beat the big institutions to the punch, though it's very difficult to figure out who they are ..."

One thing I'm sure of however is that guys like Robert Scott Bell, who I doubt could pass a high school chemistry test, aren't going to beat any big institutions to the punch. The likelihood of Bell understanding cancer treatment is about as high as the likelihood of him understanding how to design a computer chip.

Alan

in reply toskateguy

Your choice. Follow his advice and you will die quicker.

My Oncologist made it ultimately clear when he said, "I am not a Urologist, I am a Doctor of Chemicals".

j-o-h-n profile image
j-o-h-n

THANK YOU!

j-o-h-n Tuesday 1/24/2017 1:27 PM EST

Dan59 profile image
Dan59

Alan, wow so well written, gives me an inspiration, I agree with everything. This should be a post newcomers read when they become newcomers.

Dan

Numbers are nothing more an an invention followed by humans incapable of having a vision and a plan of attack. I learned just that going through U.S. Army Ranger school. I now apply that train of thought when it comes to beating those pesky cancer cells into oblivion.

Neal-Snyder profile image
Neal-Snyder

Thanks, Alan. I think it's important to try not to be depressed by doctors' estimates of how long you're likely to survive. In my experience (more about that in my response to Rich), doctors will be conservative, often to the point of absurdity. It seems they don't want to be told "Dammit, doc, you told me I had X years & here I am dying in X-1." In my opinion, they should be cheering guys (& their families) up by saying that you could have quite a while left if you take good care of yourself & respond well to treatments (even if you didn't respond well to an RP and/or radiation). Of course I also wish that more of them were open to the possibility that integrative medicine approaches could well extend their patients' lives.

Neal

As always, my friend, your words or wisdom are right on!

Gourd Dancer

Daddyishealing profile image
Daddyishealing

Thanks Alan, awesome post

JoelT profile image
JoelT

Actually, the statistics, all of which come from phase III clinical trials, do not tell us that a person will "on average live X number of months after treatment Y." Many people are confused about what survival statistics really mean.

1- When reading statistics always remember that they report group trends and do NOT predict an individual's response.

2- All clinical trial statistics are comparative. They compare the performance of the investigational intervention to the standard of care. So, the median survival of people using the intervention was z times more or less than the people who had the then standard of care.

3- Note that I said median, I did not say average. Median and average is different. We all know what an average is, but a median is different and tells us a different story. The median number is the number that is in the exact middle (which is very different than the average.

Let me provide an example that will help you see the difference. If we take the following numbers; 1, 5, 7, 10, 20, 21 and 40, lets look at their average and their median. If these numbers represent the survival of a person the average survival is (1+5+7+10+20+21+40) 14.85 while the median is 10 (the middle number without regard to to the number values). This means that the average survival advantage (not the survival, the survival advantage) was 14.85 months and the median (as would be reported) is 10.

Of course the averages and the median would be different depending on the numbers fed into the equations.

What is important here is that almost 1/2 of the people had a longer live extension than the median, the number we look at when evaluating a trial. Since the median is just 10, we do lose the understanding that, in the number set I provide, three people survived a lot longer than the average and the median.

What is the take away? Simple, we all need to hope that we are on the right side of the curve. The statistical methodology we use does not tell a complete story. In the number set I provided three men lived a lot longer because of the intervention.

Provenge only showed a survival advantage of median of 4.6 months, however 1/2 minus 1 men had a longer survival advantage and some of those advantages were for years.

Don't let the statistics drive your decisions. All the FDA treatments we use have demonstrated a survival advantage over the standard of care (which does change). How much you might get can not be predicted, it could be minimal or it could be for years.

Joel

AlanMeyer profile image
AlanMeyer in reply toJoelT

Good points.

As I think about them it occurs to me that we now have at least three different kinds of therapy available - hormonal therapy, chemotherapy and immunotherapy and more are in the works including better versions of those three and entirely new ones like "targeted" therapies. The more therapies there are, the more chance there is that any particular patient will be on the "right side of the curve" on at least one of them.

Alan

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