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Breast Cancer - The 'Popularity Paradox'
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  1  2  3  Next Page Last Page  
 

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mvanwink5
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 Posted: Fri Nov 23rd, 2012 10:44

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I know it is fashionable to blame profit for the current short term mindset and immuno suppression approach, but after a couple of years talking to my friend, I would place 95% blame on the patient. The normal patient, IMWO is interested in feeling better quick, period. They want to be functional right away. A long term resolution where they feel bad for a long time is a really tough sell (just this side of impossible). Imagine convincing a pharma executive to pursue that market much less a bureaucrat (no profit motive) with less imagination.

This group is really a product of the internet, where rarified few get-together.

Best regards
Mike



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leroybrown
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 Posted: Fri Nov 23rd, 2012 10:54

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I don't know. In my experience, the conventional treatments I've had make you feel bad for long periods of time with no cure at the end. I'm also taking a drug that costs almost $6000 a month and isn't a cure for anything and doesn't make me feel better.

I don't think you can blame the patient for wanting to feel better, that's why we're all here. I would guess that most people don't know how the system works though.

Deb



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I just know that something good is going to happen
And I don't know when - Kate Bush
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Sep '09 q8h Nov '09 q6h
JohnMcC
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 Posted: Fri Nov 23rd, 2012 10:58

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mvanwink5 wrote: I know it is fashionable to blame profit for the current short term mindset and immuno suppression approach, but after a couple of years talking to my friend, I would place 95% blame on the patient. The normal patient, IMWO is interested in feeling better quick, period. They want to be functional right away. A long term resolution where they feel bad for a long time is a really tough sell (just this side of impossible). Imagine convincing a pharma executive to pursue that market much less a bureaucrat (no profit motive) with less imagination.

This group is really a product of the internet, where rarified few get-together.

Best regards
Mike

I agree to a point about the patient palliation, but more people are questioning the efficacy of that path when they see so many with immune disease and the numbers rising despite the drugs.  Many people from previous generations simply would not question their doctor about anything (My mother was a perfect example of it)  however, I encouraged her after my father passed to be more aware and she has so far refused statins and several other drugs de jour and actually believes me about cholesterol and other documented baddies...there is hope.

My old family GP actually rolled her eyes and guffawed that I was being taken in by some internet madman....(no offence DR M :cool:) and I shouldn't waste my time chasing windmills - the guys is probably self medicating right.....not a real doctor either....

She had all the arguments down pat.... my new family Doc has actually read Amy Proals doctorate paper and was very impressed about the whole thing  - times they are a changing..

If pharma actually had a conscience beyond profit (and hiding from litigation) there would be room for the long term treatments too, not just the quickies.



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mvanwink5
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 Posted: Fri Nov 23rd, 2012 11:34

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Deb,
You are thinking rationally. It is hard to imagine, but my friend who is quite smart, balks at wearing sunglasses, but is at risk for losing his sight long term. Short term thinking is foreign to me, but to him that is the mode in which he lives his life. He gets two injections of interferon a week (14,000/year, paid for by insurance), and will until he dies, he puts eye drops in his eyes every night (30 minutes each treatment), he now has a pacemaker. I could go on but I might start banging my head on the wall just thinking about it. I explain that all these disparate issues are like the termite damage to his house, one invisible cause but obsevationally different symptoms all over the house. I explain that all his current treatments are only making for progression of his multivariate and ever expanding illnesses. I even promised to pay for all his medication and treatment costs. You see, for the time being, these treatments are mitigating the problems. No, I blame the patient, and intelligence is not the obstacle, nor is rational argument.

Just remember, if it wasn't for profit motive the Chinese would not be making the PO (and consider how small the order is). It certainly is not their desire to cure chronic disease. I have far greater confidence in profit motive than bureaucrat compassion, caring, and long term thinking.

Best regards,
Mike



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leroybrown
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 Posted: Fri Nov 23rd, 2012 12:20

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Well, I'll be the first to admit I am cynical. That's too bad about your friend. I have found most people do not want to know. I don't get it, but I guess if we did get it we wouldn't be here.

Deb



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I just know that something good is going to happen
And I don't know when - Kate Bush
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Sep '09 q8h Nov '09 q6h
mvanwink5
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 Posted: Fri Nov 23rd, 2012 12:45

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Deb,
My niece just got her Phd in biomedical engineering and she was appalled that I was doing the MP. The obvious conclusion on my part was she did not investigate herself, but read some opinions from others. She is young so she hasn't learned that if it is important, there is no substitute for knowing yourself. On the other hand my friend is not young, and his decisions are purely derived from short term, step by step actions, which is reflected in his downward health progression. I really don't want my medical decisions to be put in the hands of political machinery where they have a say (my niece and my friend), at least any more than what is in place already. Reducing choice frightens me as it never ends up good, no matter how noble the intentions. That is my point.

Best regards,
Mike



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leroybrown
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 Posted: Fri Nov 23rd, 2012 13:15

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Definitely a good point Mike. There's a doctor in our family that I wouldn't want in charge of my treatment.

Deb



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I just know that something good is going to happen
And I don't know when - Kate Bush
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Sep '09 q8h Nov '09 q6h
Frenchie
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 Posted: Sat Nov 24th, 2012 02:09

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mvanwink5 wrote: I have far greater confidence in profit motive than bureaucrat compassion, caring, and long term thinking.
A balance needs to be struck and currently it is skewed.  You raise a valid point about the need to find IP palliation for those who lack the self discipline showed by those on this site, and perhaps industry would be able to concuct somthing if presented with the opportunity, but they need to take direction from public health authorities rather than the other way around.  There is a fundamental problem when the only way to find information about emerging treatments is from internet patient groups, and I can't say I have seen the signs of change in doctors that others here are describing.



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pgeek
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 Posted: Sat Nov 24th, 2012 04:19

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mvanwink5 wrote:
My niece just got her Phd in biomedical engineering and she was appalled that I was doing the MP. The obvious conclusion on my part was she did not investigate herself, but read some opinions from others.
When I was investigating the MP back in 2009, I ran into a problem finding a digestible, coherent, referenced account of what it was. I tried looking for independent assessments of it; some were very critical, frequently in rather stupid ways, but without more or less understanding the MP, it was difficult to think of the rebuttals myself.

Your niece's background ought to make it very easy to 'get' the MP if she read either of the peer-reviewed papers on the ARF site. Do you know if she's aware of them Mike?



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cmusgrove
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 Posted: Sat Nov 24th, 2012 18:12

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Keith said:
There is no money in curing cancer, only in treating it.

Since there have not been ANY cures for cancer, yet, I think the jury is out on whether there is money in curing it. So, it seems that "treatment" IS the only option at this point. The MP being one of those "treatments".

I am also highly skeptical of the UK health system funding studies to point out that treatment is not the best option and most cases are simply "misdiagnosed". That's not to say the article lacks merit, but last time I checked, the UK public health system has been broke for decades and looks for any and all ways to either cut or deny care for serious illnesses. Bureaucrats almost never have you and me in their best interests.

I am of the mindset that you should not settle for less when it comes to your health. It seems that most people resign their fate (medically speaking) to other people (i.e. doctors) who, for the most part, palliate and fail to fix. This article simply underscores the fact that most doctors are throwing diagnosis darts with a blindfold on.

Dr. Marshall said:
I think there is one factor which might change the current paradigm -- information.

Yes, but most people (not including the MP cohort) are unwilling to question anything their doctors say...95% of my immediate family included. What's the first thing your doctor says when you walk in and say "I found this information on the Internet"? They say "Stop looking at the Internet", and most patients do exactly that. Very, very few people take ownership of their health.



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Prof Trevor Marshall
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 Posted: Sat Nov 24th, 2012 19:35

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Indeed. When one of our members gets a cancer diagnosis (which is fortunately a very infrequent occurrence) I walk them through getting the original pathologist's report, and the full paper trail right to the final doctor's desk. Invariably I find that the pathologist was not at all certain they had found an active cancer, yet the oncologist typically sends a report of 'cancer' back to the patient's doctor.

So what I have seen our members typically experiencing is in line with what this study is concluding.

..Trevor..

mvanwink5
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 Posted: Sat Nov 24th, 2012 21:14

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If I would be bold and throw caution to the wind I would point to globalization of the human micro biome (and for that matter, this applies to animal and plant micro biomes respectively, IMWO) as the epic battle brought to its head. Given the theory that infectious disease is at the heart of cancer, then it would seem to me that we, as human kind, haven't seen nothing yet. I am not saying that all the typical bogeymen (pollution, etc) don't play a part (maybe just a bit part at that), but I put my money on microbes as being the elephant (termites?) in our living room.

That said, we have done so well as a species with our innate immune system achilles heel that once that hole is plugged with olmesartan, I think we stand a chance. Further, with the internet maybe the paradigm shift will take less than 50 years.

Now the real point. Thank you Dr. Marshall for your courage to state so boldly the truth about cancers as it applies to our cohort.

Very best regards,
Mike

Last edited on Sat Nov 24th, 2012 23:09 by mvanwink5



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pgeek
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 Posted: Sun Nov 25th, 2012 02:35

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mvanwink5 wrote:
If I would be bold and throw caution to the wind I would point to globalization of the human micro biome (and for that matter, this applies to animal and plant micro biomes respectively, IMWO) as the epic battle brought to its head.

Don't GMOs muddy the waters even further?



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mvanwink5
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 Posted: Sun Nov 25th, 2012 07:17

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PG,
I'll take that as an opportunity to pull back to the main point which was the significance of Dr. Marshall's observation about cancer and experience within the MP cohort. As complex as the biology is, data is our only solid refuge, and the results are profound in what they indicate.

Best regards,
Mike



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 Posted: Sun Nov 25th, 2012 14:08

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personal note
I am 73. I've had two separate cancer Dx
Lost one breast when GP referred me to surgeon who took out the lump and pathology found stringers showing spread, so I lost a few lymph nodes also.  I think he is an excellent bloke, the nurses like him and that must mean something.
No standard chemo, thanks be, but took tamoxifen for a while.
I occasionally pop into his office to say look, I'm still here after twenty years ;)

An 83yr old friend of hubbie has just had his third operation to cut off patches of BCC a 'slow growing' skin cancer (Each time he goes through a heap of pain in the first few weeks.)
I seem to have the same Dx but very different outcome, The cancer was recently diagnosed on a spot I have had for 5 years or so next to a scar where my now retired GP took a surface "pre-cancer" off, same side as the breast cancer.
Nervous but happy now - my 6 month follow up appointment with dermatologist, he put me on 12 month recall :D



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Prof Trevor Marshall
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 Posted: Sun Nov 25th, 2012 17:09

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:)

keithw
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 Posted: Sun Nov 25th, 2012 22:28

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A quick post in answer to Frenchies comments earlier regarding Oxygen concentration and why I believe lack of O2 is responsible for the state of illness these days.

A little light reading...

http://ehstoday.com/safety/confined-spaces/ehs_imp_32784

http://en.wikipedia.org/wiki/Atmosphere_of_Earth

http://thenaturalhealthplace.com/Articles/Oxygen.html

http://blogcritics.org/scitech/article/atmospheric-oxygen-levels-fall-as-carbon/

http://www.o2planet.com/articles/o2changing.pdf

http://www.internethealthlibrary.com/Therapies/OxygenTherapy.htm

It's also worth pointing out that O2 is the first treatment for any breathing issue both in hospital and here too.

Just to clarify my point, I am speaking (typing) about low Oxygen as a result of pollution which is an entirely different subject to altitude, there may well be some mountains where the air is murkier than the city at the bottom of the hill but I can't bring one to mind.

Cancer is a heavy topic and breast cancer is the most emotional diagnosis and this is unfortunately the reason why it generates so much publicity and attendant revenue.

Having a wife that has met this first hand along with the complications that arise from treatment I am vocal in urging awareness and prevention rather than expensive testing and perhaps unnecessary intervention.

:dude:

Last edited on Mon Nov 26th, 2012 18:49 by keithw



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 Posted: Fri Nov 30th, 2012 21:35

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Well, your numbers for variation were way out of line.  Good to see you removed that.

http://en.wikipedia.org/wiki/File:Sauerstoffgehalt-1000mj2.png

"The oxygen level was only 23% 40 million years ago, and had reached the present value of 21% by 25 million years ago. Since then the level has remained constant, apart from fluctuations in the per thousand range."  >> 0.1%

Cynthia



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Prof Trevor Marshall
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 Posted: Sat Dec 1st, 2012 04:25

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Cancer is a heavy topic and breast cancer is the most emotional diagnosis ..
Having a wife that has met this first hand along with the complications that arise from treatment ..

Sadly, Keith, it takes a lot of knowledge of the new 21st century medical knowledge to even begin to understand the many symbiotic processes needed for a metastatic cancer to form in Homo sapiens.

99.9% of what the average Doc tells you about cancer, and that you read on the web, is pure guesswork or wishful thinking. The diagnosis is primarily emotional because of ignorance and fear. The problem is that a similar emotion and fear drives a patient to rationalize the disease process in words they themselves understand, words which often have no rational basis in the genomic science.

The pathogenesis of Cancer is a moving target. The treatment of cancer is a huge industry. But there are two things which are becoming abundantly clear:
1. Whatever the trigger for proliferation, cancerous cells proliferate when the innate immune systems fails to stop them from doing so
2. Those environmental factors which have been confirmed as carcinogenic all have a profound effect on the immune system

I think that the reports of cancer diagnoses from our members on the MP, and the (fortunate) lack of metastasis in those reports, are in accord with both those points. Let's leave the past behind us, flush our minds from what we think we already know, and take a look at the world of cancer through a new lens...
 

keithw
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 Posted: Sat Dec 1st, 2012 14:29

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"99.9% of what the average Doc tells you about cancer, and that you read on the web, is pure guesswork or wishful thinking."

Dead right, for this reason I prefer to seek info away from the usual sources.
Wiki in particular tends to publish data that is popular at the time and is by definition is subject to change.

For example, information leading to this site was obtained via an incidental insert on an obscure website that I am also a member of, not Wiki who have never heard of us.

It would be good if all knowledge was easy to find but that's not the case on any medical subject as we know well and is the reason why I urge members to post to expand our knowledge base, I am "leary" of heavily funded institutes and stick by my earlier post of research driven by personal gain.

There are too many people working on the cancer problem, it's become a "gravy train" of secure employment and while I am certain your points on the connection between cancer and the immune system are correct, mainstream medicine will continue to ignore it as there is no profit in it.

:dude:




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WeanPred May09 no breaks SLE, CNS vasculitis, avascular necrosis, arthritis both shoulders Ph1Aug09 Ph2Nov09 Ph3Feb10 25D35(May09)18(Mar10)16.7(Jul10)13.6(Jan11)13.2 (Oct 11)14.8(Aug 12) around 35(Jul14)due to weight loss!

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