From the several cancer patients I have known, hope is vital to their getting up every day and undergoing all that they do to preserve life, for however long it takes. It's what they wrap themselves in at night in order to sleep with a modicum of peace. All things in moderation, sure. But when it comes to hope in the face of cancer, I don't think there can be too much. We're all going to die anyway, so if we choose to die with hope in our hearts who is to say that is a bad thing?
I agree and I was quite put off at the title of this article. My Mom died from lung cancer and from the day she was diagnosed in July 2008 she was just a mess of pessimism. Don't know if optimism may have left her live longer, but I just can't believe it couldn't have hurt. Then again, she probably didn't want to live that way for very long.
If I ever get cancer, I'll be happy as twelve rainbows dancing on unicorns with all the prescription opiates I'll be *legally* sucking, shooting, snorting.
I think this article and it's title were misleading. If there was no therapeutic benefit expected then why even test a treatment? It is being tested as a possible treatment, but in phase I they are checking the side affects. Many of these people have been given a death sentence already, to try something new makes sense if you want to live. Does the author want all the cancer patients to give up hope and go pick out their caskets? There are no guarantees in life about anything, hope is what keeps us going.
I would hope that anyone diagnosed with cancer would try all the treatments they can (including alternative medicines), instead of just giving up. Through the clinical trials new treatments come on the market every year.
I liked the comparison of cigarette smokers..... NOT! To compare high risk activities to seeking cancer treatments is frivilous and ridiculous.
Hope is not a bad thing unless it comes with the price of a lower quality of life. The time for placebos is long gone. Drs. should not be making guinea pigs out of people in their most desperate of times. If the patient is not making preparations for their death, they should not be a test dummy.
It is all about the pharmaceutical companies getting free data from the most pitiful people in their time of need.
While it is truly good to have hope, false hope is what the story is complaining about. False hope can keep a person from using their last weeks or days to their (and their family's) best use. And false hope can make the difference between a peaceful and dignified end and a painful anxious end. And lastly, false hope can be used as a way of draining the last assets of an entire family into the pockets of the for-profit medical industry.
In early-phase testing, they are only looking to see if a drug will damage you more than it can possibly help you. If patients are seeing something difference, part of that is their own fault. But part of it is also the fault of, primarily MD's, who are running the clinical trial and not living up to their informed consent obligation. The choice is a) use existing therapies and shoot for a mostly pain free and dignified end, or b) try something with an extremely minute chance of benefit but only to establish its toxicity. Using false hope to lure people into the latter is reprehensible.
This country is facing a huge problem with pharmaceuticals and treatment that are incredibly expensive and do not provide any significant extension of life or improvement in quality of life. But physicians and drug companies emphasize how to shame families and patients into opting for these treatments --- "Don't you want the very best for your Dad?"
A good example is Aricept. It is a drug that supposedly helps with Alzheimers. But it does quite the opposite. It does statistically slow the progression if the disease by around 5 months. But then it stops working and the disease returns with a vengeance. In fact, when the drug is stopped, the disease advances by almost a year in the next 2-3 months. The net result is that Aricept actually causes the disease to advance more quickly overall. And Aricept costs about 14 times in this country what it costs in Canada.
This same sort of thing happens over and over with various surgeries, therapies, and drugs. The patient is offered false hope or the family is shamed into "demanding" the drug. All that happens is that the patient stays in the hospital with degraded quality of life while the family's assets are transferred to physicians and drug companies, and hospitals.
60% of all bankruptcies are caused by unanticipated medical bills. Of that 60%, 40% of the people had health insurance deemed "adequate." This is shameful. When did we decide that it was okay for drug companies to make an 8,000% profit ( see viz Aricept) from human misery by using false information and humiliation? The right wing, at the behest of the for-profit medical establishment, has made the whole issue toxic by shouting "rationing" and "death panels" at every opportunity.
IMHO everyone would be much better served by recognition that life is a finite experience and WILL end some day for everyone. And that a death at peace with minimal pain is a worthy and often attainable way to go. There should be a lot more emphasis on hospice --- low cost care that emphasizes comfort, emotional support, and realism about the future.
Luckily, my wife is a gerontologist and we have had sufficient pointed discussions about what each of us wants that I am sure that she can negotiate the mine field of greedy physicians, grasping hospitals, and valueless drugs and take care of me in a realistic and caring way when it comes to that. We have already incorporated into out Living Wills and Health Care Directives, the appropriate mechanism to immediately sue any physician or health care agency who tries to violate or disregard the Living Will as most try to do.
I think people are misunderstanding this article. These people participating in these trials have false hope. There isnt likely anything about these drugs to help them, and thats not the purpose for them signing up.
My Aunt battled cancer for quite some time, when it came back the 2nd time - she fought hard, as it spread she tried every new and cutting edge treatment available, including ones not even in trials yet. Then, as it spread to her brain and it became abundantly clear the end was there she had a choice:
The doctors offered to try more things, of course they did - they liked my aunts money. She was wealthy, and paying for all of this out of pocket mostly.
My aunt was a fighter, she never gave up on anything. But she chose not to fight reality anymore.
She opted to spend the last of her days with family and friends, for as long as she could. it was around July of 08 when she made this choice, at that point she was told she wasnt suppose to have much time lfet, maybe 3 months. My aunt didnt accept that, and was determine to live as long as possible. By september the pain was so bad she had to be medicated most of the time. By December she wasnt really with us anymore, mostly drugged to keep the pain at bay.
She finally left us in March.
I wonder, if these folks were told "you are not going to get better by participating in these trials, this is mostly for us and for our research" how many would participate. Im certain many would, because they want to help find answers for future generations.
But many others would probably choose to spend their final days without additional side affects and enjoy their time with family.
My aunt didnt slow down and spend time with family UNTIL she concluded the battle was over. Up til that point, she was still working and in denial that her life had been given a time table of 3-6 months.
People need to be properly informed about their choices...I cherish the time I spent with my aunt over that summer. I wouldnt have had those moments if she chose to keep battling.
This is so well written, and is exactly what happened to my Mom. The Doctors did indeed try to "shame" us, her family into an extremely toxic drug trial. She had weeks to live. She died from a toxic drug reaction. The entire story so very sad, but now my entire family wishes they had told the Doctors, No. I had a big fight at the time with my family over the drug trial, wishing she not be in it. I lost and so did my Mom. The worst part was how cold the Doctors in the trial were "she had nothing to lose she was going to die anyway in a matter of weeks, no matter what".
Yes, but now all her children and spouse can think of is I wish we had listened and taken her home to be warm and have tea with us all until that day. Instead of the cruel terrible painful toxic way she died in front of us all.
Too many people on here are misguided about early phase clinical trials and pharma companies. Let's not forget there are good and bad sides to every argument. If you don't want the treatment, don't sign up. It's an individual choice. Family may be against it, doctor may be pushing it, but when it comes to who signs the form, it's the patient (not the doc and not the family). Here's a thought...try to have these discussions with family members and care givers early on, before it comes down to experimental trials.
wj-777816 said: "Drs. should not be making guinea pigs out of people in their most desperate of times. ... It is all about the pharmaceutical companies getting free data from the most pitiful people in their time of need".
Yes, some (but not all) doctors are awful human beings that did not get into their profession out of altruism; I've personally met a few. Yes, big pharma will make a fortune if the drug is allowed on the market. Corruption is an increasing problem with these trials (especially ones done in impoverished nations) and the FDA turns a blind eye to a lot of it. That needs to be addressed pronto!
However, SOMEONE had to be among the 1st to try every single medication or treatment regimen we rely on today. It could have killed them quickly, slowly, or just not have helped them at all. It's a harsh reality, but reality none the less; someone had to take the risk so that millions would benefit (or be saved if the only lesson learned was "hey, in theory it should have worked but that stuff actually kills".)
Millions of people suffering from a variety of maladies are enduring an extremely low quality of life and they are praying that the next advancement isn't too late for them because they are hanging on by a thread and they can't do it for much longer.
I'm extremely grateful to the Canadian men and women that took the informed risks necessary for the medicine I am now on to make its way through trials. The therapies available at the time were not working for me, looking back I see that my quality of life was worse than I had realized at the time. For me there was a lot of pain, more surgery and eventual disability and an early death due to complications on the horizon, a year after becoming available in Canada my medicine hit the market in the US. Now my life expectancy is average again! More importantly, it's a life worth living! :-) There are some scary side effects of this stuff, every horrible thing listed actually happened to somebody during the trials and they endured that not knowing if it would ever amount to anything positive; but fortunately a greater number were helped than hurt.
While doing my due diligence and researching the drug before taking it I did find out that there was some misconduct on the part of the drug company. Canada has a national health care system and the drug maker was strong arming participants of the trial who wanted to remain on the drug to write letters to their representatives so that the drug would be given the necessary approval to be paid for by the national health system. It makes me angry to think about it happening and I'm still not thrilled about the fact that I'm giving money to the people who did this to the trial participants. (I was in their shoes at the time so it didn't take much imagination to figure out what it would mean for them if access to the drug was cut off) but if the incident was used as a reason for everyone to refuse to participate in other studies a lot of people will have been done a greater disservice.
If the medicine ever stops working for me as some therapies have been known to do, I know what misery I will be going back to. If I'm then given an opportunity to participate in a study I will do my due diligence and then I'll most likely roll the dice. I know that there is a great deal of danger involved but someone already took the risk and I have benefited from it for over a decade now; I would never judge someone who chose not to participate in a trial and I feel that they shouldn't be subjected to quilt or pressure, but paying it forward seems like the right thing for me to do.
Every day the media reports some obscure study meant to convey the impression that our culture has all the answers. Yesterday it was "Marriage leads to increased happiness, health." For real, I swear. Remember when they told us butter was bad for you and everyone ran to oil-based spreads as the cure for--everything? Right, then another study comes out and says, yeah, no, those plant oils are much worse for you than butter. One week it's this, the next week that.
Here's my findings:
Irrelevant studies lead to money wasted that would be better spent on anything else.
But these are the stories you never hear about because big pharma and the FDA say ONLY DRUGS can CURE anything. (and the method he is using can't be patented)
Cancer treatment is a scam and a multi-billion dollar cash cow in the US alone. Good luck getting a CURE from big pharma. They would have to be looking for one first, and they not.
The day I was diagnosed with lung cancer, I was ushered into the office of a doctor who was a principal investigator on a Phase I trial. He told my wife and I "the standard treatment isn't going to do a thing for you." A death sentance, right? Refusing to accept that, I got a second opinion. The team of doctors at the second cancer center recommended the standard treatment, and said "We're looking at a cure."
So I entered treatment, the totally standard protocol, and, indeed, there was no evidence of disease after a year after I finished thecourse radiation and chemotherapy. It is four and a half years later and I still shudder to think what would have happened if I had listened to the first doctor. It was a clear case of conflict of interest. He was having trouble finding qualified patients for his trial so it seemed he'd say anyting to scare them into enrolling. I followed that trial and it was determined that the drug they were experimenting with produced NO effect on lung cancer whatsoever.
I think that there was some sort of complicity on the part of the the powers that be, and maybe his fellow doctors at th ecancer center at which they worked. I'm not talking conspiracy, but how is it possible that he was doing what he did without a single person knowing and reporting his unethical behavior.
What I learned through this, and pass on to other cancer sufferers, is that you are your only reliable advocate, and to blindly leave the decisions to be made in the hands of others could be fatal.
My wife is a PhD gerontologist who has worked in several Tier 1 Medical schools. She is a conscientious researcher whose field includes end-of-life issues. Finally, she is out of the medical school rat race and is a tenured full professor and center director in a Tier 1 university without a medical school.
What has surprised us is how money-oriented medical schools and the medical profession are. And the degree to which they pollute the ethics of other faculty within a university.
You have to consider a few things:
1) MD's, for the most part (around 62%) do not have a college degree of any sort. Instead they have a degree from a medical "school" that is vocational in nature. Not bad-mouthing the degree, just building a case. The absence of a real degree also means that their education is very lop-sided and much of the liberal arts education that would be required of even a BS in, say, biology is missing. And in the OJT than comprises much of their training, it is not even available. Most medical schools offer many times more courses in running the business side of a practice than in medical ethics.
2) MD's have zero to absolutely minimal training in research. They are not taught to design, conduct, or evaluate clinical trials. They simply have no skillset in this area unless they have gone to the trouble and considerable effort of adding an earned advanced degree and spending the trouble mastering their field. Yet medical research is dominated by physicians without the essential credentials.
3) A specialist MD requires about 5 years to graduate then another 3 years of OJT. His expectation is that he will hit the ground with over $250k a year to start. By contrast a PhD in a medical field takes an average of 9 years to graduate and then can expect another 15-20 years of post-doctoral work in progressively more responsible research before they can operate as a Principal Investigator (PI). And their starting pay as a PhD? Around $38k --- about what an intern makes.
4) Because MD's lack the knowledge and skillset to design, conduct, or evaluate clinical trials, they have to have others do the seriously difficult for them. This is usually done by the drug and medical equipment companies themselves. It isn't just a serious conflict of interest, but usually is physicians who rely entirely on the wrong people to do the hard work and lack even the basic skills to determine if it is being done correctly.
5) Over the course of the past 60 years or so, physicians have managed to elbow aside PhD's in critical research areas --- the CDCP, the FDA, and major medical schools among them. And they have brought along major ethics and conflict-of-interest issues as well. A case in point would be the FDA and the drug approval process. Since its founding, it has gone from a mostly PhD-staffed organization to a mostly MD-staffed organization. Its director is an MD, JD. FDA officers are required to disclose all financial ties to the for-profit medical industry. 80% have not done so. Of the 20% who have done so, about two-thirds have unresolved conflicts of interest. A good example is this guy, who I know personally:
I am glad that your story has a good outcome. I do not wish bad on anyone. But, unfortunately your story is all too common. And as far as your question goes, the reason that this sort of thing happens too often is that we have foxes guarding the medical hen houses. Until we reform medical research and get it back to pre-1960 levels, this is the sort of thing that can be expected.
And before people try to nail me: I believe that medicine is hugely important profession. I know many physicians who are good and caring people and who sincerely try to help people as their prime mover in life. But having an MD does not make you an expert in EVERY field and does not confer god-like qualities.
And, indeed, you are correct. The you are your best advocate and the smartest move in any medical situation such as yours is to become informed and aware in an honest and realistic fashion. The bottom line for cancer patients is that, since you are generally looking at a single disease process, it is remarkably easy and quick to educate yourself to the point that you know much more about your particular disease process than any physician you are likely to encounter.
Chris you bring up many good points especially #2-6. However please re-check #1. The BS Biology is just that, BS, because it's a guaranteed 4.0 track into med school. Meanwhile all the chem/biochem, bme, pharmacology, immuno, micro, etc. degrees are much harder to earn at the undergrad level and you're right...these are the people who go get PhD's rather than MDs and conduct research. In any case med schools will NOT admit you without a stellar GPA with an undergraduate degree in life sciences, with a competitive MCAT score, and usually several years experience/internship/volunteer work in a related field.
But I digress, to address your valid points (#2-6) the real problem is that here in our country we don't value MD's AND we don't value PhD's. You can see that by the numbers being graduated compared to abroad. If we don't trust doctors and ALSO don't trust researchers, where then does one place their trust? The internet a la WebMD? In America we all think we know best for ourselves and nobody takes advice from anybody else anymore. This mentality needs to be fixed before any progress can be made. I for one am fully for research-oriented solutions to medical problems. I want more PhD's on the IRB. I want PhD's to earn more, to have more incentives to innovate. But just as MD's aren't trained to conduct research, PhD's aren't trained to treat patients. So a level of trust must be established for the system to work, and right now, the trust ain't there for most people. Unfortunately most people listen to the awful headlines (written by journalists, not PhD's and not MD's) than dig for themselves. PubMed and clinicaltrials.gov are excellent resources.
Chris, you are misinformed. Doctors always have an undergrad degree before going to med school. It is a requirement of acceptance. Also, more and more of thm are majors in the Humanities and not science majors. Second, in my medical school I had at least three courses in medical ethics - and not one in business. I had to actively seek out training in how to run a medical practice - it's simply something they don't teach you in med school. Also, starting salaries are about half of what you mention. There are plenty of good, hardworking and compassionate docs out there. Stop maligning the medical profession!
I submit that the time and money spent on this study would have been better spent on research that actually aims to cure cancer.
More research on drugs, treatments, protocols that actually aim to cure cancer would be good. But that doesn't mean this study is not helpful, IMO.
Leaving aside the important facts that unrealistically optimistic patients in a Phase I trial may not get the pain care they need or be able to spend time left with their loved ones in the best possible manner, this study points out that unrealistic optimism can lead to skewed results which could wind up wasting even more money.
As this article reports, unrealistically optimistic patients in a Phase I trial (to test toxicity) may ignore or decline to report side effects. So, with skewed results, more money and time might be spent to run the next 2 phases when perhaps the drug shouldn't have gone past Phase I.
IMO it will be money-, time-, and life-saving in the long run to understand the effect of unrealistic expectations so that they can be re-set, and researchers, doctors, and the patients themselves are assured of fully-informed consent relative to both the study and how it might affect the patients' last days.
the sad thing about this article is that the drug studies are "only testing drug toxicity with no theraputic benefit for patients". So they are taking bodies which have already been subject to many poisons of chemo and further damaging them by putting potentially toxic drugs into them just to prove them non-toxic.
That's because healthy people wouldn't volunteer. I believe the treatment is indeed dangled as a "hope" for those whose other therapies have failed. it's no wonder those who agree have unrealistic expectations. The same racket is used to sell lottery tickets--everyone knows that the chance is miniscule, but as long as they can point to winners, people will keep buying.
The article states that the trials "only test toxicity of drugs and aren't intended to have a therapeutic benefit". Are the test subjects being told that since they are going to die anyway, we want to see if this drug kills you first and it won't have any effect on the cancer that is allready killing you? Sure the drug companies want people to have unrealistic hope, otherwise they wouldn't get as many people to sign up for the trial. I may be wrong but I don't think so, after all it's all about more profit for them.
Drug companies will profit and that's too bad since they seem to be run by evil bastards these days but the fact is that they are going to be in business as long as people can afford to pay for the drugs that improve their quality of life and even prolong it. Participants are absolutely supposed to be told that it could cause irreversible damage up to and including death (then they have to sign a form promising not to sue if it does).
There are many known cases of misconduct (officially they call it misconduct but I think evil is more accurate) in which participants were signed up under false pretenses, or it was know that they had completely misunderstood and thought that they were getting actual medical treatment. Most of this happens in third world countries where officials can be bought-off cheaper than ours can. Although, from just looking at some of the other comments it's clear that major misconduct is frequently happening here too.
The current system is rife with conflict of interest from start to finish. Extreme reform is desperately needed, just look at all the recalls! Really harmful stuff is being pushed through all of the trials and getting to the market with a big fat stamp of approval from the FDA.
Knowing all of the above there are some people that realize it's too late for them, they will absolutely not live to see another year pass or witness another milestone in a family members life. These people are generous enough to participate in these trials as a final gift to all humanity. The gift is precious even if the study concludes that the compound is toxic & of no therapeutic value because the faster our scientists know that they are on the wrong track, the quicker they can go back to the drawing board.
Having said that, due diligence is a must, you have to look out for yourself even when engaging in a selfless act! Research needs to be done to determine if there is a conflict between what is best for your doctor and what is best for you. Multiple opinions should be sought out and you should report any apparent misconduct you uncover to the authorities and any agency or association the doctor claims to be accredited by. Granted, you may not have a lot of fight left in you if you are sick enough for it to be plausible when someone says "you're dying" but helping to weed out the corrupt sounds like another gift to all humanity.
Thats Phase I trials. I believe in Phase III, there is more optimism for outcomes. These are somewhat proven trials (at least that's the way it was explained to me). It beats the heck out of being told you have 14 months and nothing will buy you more than a few months. My oncologist told me that so for 8 months I just lived life. When I finally decided to try clinical trials, my cancer cells dropped 46.8% in 3 months. Sure glad I stopped listening to my first oncologist!!!
"Even though patients are given an informed consent...". Are they read this information, or is it just like anything else today, "Just sign here". I have lost my wife to cancer. Everything I read about alternative cancer tretments were pooh-poohed by the doctor. Lots of money in prolonged killer chemo therapy. She was a pathetic case for 2 days after her treatments, and progressively got worse and just gave up after 6 months of total pain, ande finally succumbed. I hope that doctor bought a leaky sailboat with all the money he made at her expense.
I am with you on this, they put my husbands first wife through hell and tested her and poked her and took away anything she could have had in life by making her miserable till her death. Life is a terminal illness and I will die from something, I will not be taking cancer treatments and neither will my husband. Watch run from the cure on youtube. That is my plan if I am diagnosed with any disease.
Cancer treatment is the financial support of the drug companies.
I can remember one of those "New Age" people, whose name I will refrain from using, who I cannot quote the sums of money they earned but I would assume it was millions. The individual preached how you could essentially cure yourself through attitude adjustment and positive thinking and I believe it was essentially implied if you became ill with something like this it was your "thinking" that caused it. What a c-r-o-c-k. I had a good friend who became tragically ill in his twenties and clung to false hope via that message and went to his grave thinking the reason he was dying was "his fault" because his "thinking was wrong". What a cruel false message for someone to deliver to others. The cold hard facts are very hard to face. I think to that documentary on Farah Fawcett's journey through cancer treatment. It was as if that poor beautiful woman was introduced to a house of horrors and a torture chamber. How brave, but how tragic.
I believe the mind is an incredibly powerful thing and that with the right attitude there is not a lot the human body can't handle. However, for cancer patiets its tough to stay upbeat and positive when slogging through chemo or radiation on a regular basis. It's terrible to think that the effects of some cancer drugs make patients feel sicker than the cancer itself...
And finally, MSNBC should stop posting articles like this. Optimism never killed anyone. I certainly wouldn't fight cancer with the attitude that it's going to beat me. At that point I might as well give up...
I am a lung cancer patient and went thru surgery and chemo. I didn't find chemo all that bad, they give you drugs to prevent nausea. All I felt was tired but I attribute part of that to recovery from surgery. My attitude is , it is what it is and I live my life. I don't think about my cancer except when I have to have a scan and wait to find out if I am still cancer free. I don't know if I'll beat it but I will embrace every day.
There have been experiments, accepted and replicated by the medical and scientific community, that prove that positive thinking PLUS proper treatment (operating, chemotherapy, radiation, laser knife) can prolong a cancer sufferer's life. At the very least, it improves ones quality of life.
There is a catch-22, though. The belief in positive thinking, as touted by its advocates, seems to go along with the philosophy that somehow, the disease IS YOUR FAULT. That I never bought into. When I had lung cancer, I kept a positive, even rosy, outlook but never bought into that negative philosophy.
Positive thinking and being one's own advocate, meaning educate yourself and analyze everything you're told is the key to survival, whether for a normal lifetime, as in my case,, or a few more months. Whatever you do, don't buy into the BS that the principle investigater of a drug trial, especially Phase I or II, has a vested interest is pushing on you. It's completely unethical, but it happens. I know, because it happened to me. I refused to accept a death dentance "unless [I] participated in the trial", and went for the standard treatment recommended by the doctors I went to for a second opinion..
I can't help but think that my positive thinking, as well as my being my own best advocate, is what led to the cure and the fact that I'm alive 4 1/2 years later.
Wow! This article is really poorly titled. As somebody who is in the alternative medicine field and has done a great deal of research into mind-body healing, this article would lead one to believe that optimism is detrimental to the healing process. In fact it has to do with pharmaceutical drugs and their trials being "successful or not". Jon Kabat-Zinn and others have done research for years on this topic with great success. Here in Madison, the Center for Healthy Minds uncovers more daily about the power of the mind and how this can, in fact, change the body. Shame on MSNBC for printing an article that takes away hope from cancer patients instead of titling this article more responsibly.
........ too many people world wide are making huge sums of money treating cancer patients ...... as a widower of a cancer victim , i cant see them giving up all the millions and millions made from cancer patients .......
For those who seem to be incredibly hostile toward anyone making money from treating cancer: would you rather no one treat cancer because they might make some money doing so? Having been a research nurse in Phase I and Phase II clinical trials for terminal cancer patients, I know many patients who weren't particularly optimistic about their fate, but graciously consented to be study subjects. Many died, but more than a few lived longer than expected and several are alive and well with good quality of life, though not 'cured', today! When it comes to cancer, it's all in the genes and finding specific targeted therapies and that costs money - a lot of it.
Cindy - you should think before you post. You just slurred the 1000's and 1000's of dedicated research scientists and doctors with your moronic post. The idea that all these people, who spent years and years obtaining advanced degrees, are all in a giant conspiracy to make money is beyond stupid. Seriously. It beggars belief that anyone could opine such crass libelous idiocy.
No, Ivanho, you don't get how it works. Thousands and thousands of dedicated researchers spend their lives working on understanding of and cures for cancer, but getting their findings to the trial Phases, much less putting the results of their dedicated research on the market, is, I strongly believe, thwarted both by government, who in trying to protect us frequently do us grave disservice, and the greed of Big Pharma.
Cindy and famousperson are right. Think of how many jobs would be lost (insurance company personnel, hospital workers, oncologists, radiologists, pharmaceutical company workers, etc.) if a cure for cancer -- or any other chronic disease, for that matter -- were found, publicized, and made available to the general public. Think of the billions of dollars that would be lost every year on just chemo drugs and radiation treatment if there were no more cancer. It's much more lucrative to "manage" disease than to "cure" disease. Management = a lifetime (however long or short) of contributing to the bank accounts of the medical and pharmaceutical industries. It's all about job security, I'm afraid.
I wish I could remember where I saw it so that I could post a link but a few years ago communication was leaked in which a pharmaceutical executive wrote that his goal wasn't to cure cancer but to see cancer turned into a chronic ailment which can be managed, such as diabetes or asthma. ...yep, greed is that powerful.
We may never know if a cure has already been withheld.
I can't see why people assume that jobs would be lost if a cure was found, folks would still fall ill with cancer except they would be able to treat it and move on. Drug manufacturers would doubtless charge a fortune for it too.
There are hundreds of illnesses for which virtually no research is being done because there isn't enough funding for it all. If cancer was out of the picture we would all breathe a huge sigh of relief and then instantly start worrying about the next most common "incurable" disease. The "big C" would be something else and the army of scientists, consultants, physicians and care givers would redirect their efforts toward the new "big C".
It would be important to me to do everything I could. Then I could accept the final outcome better. Also, I choose to live with some hope. For me, acceptance follows hope and effort. Hope is an element of "what I could do". A realistic representation is necessary, but it is also meaningful to tell the patients that in the long run, they are helping others. Hope, effort and feeling a part of all others will lay the foundation for acceptance. This scenario beats facing a meaningless death.
Too much optimism? There are greater problems to be addressed in this venue of healing.
Hope is a hard thing to hold onto when they are shoving a port into your chest and dripping a $16,000 per dose drug(poison) into your body. I know several people who were saved by trials and others I have buried who tried everything the wallet would pay for, alternatives included. As a current survivor, I don't know what the answer is, but I do know hope returns with a vengeance and you somehow demand more of life because you have come so damn close to the end of it. Trials can eventually save or extend life - I am here due to a drug called Herceptin, no picnic but without the financial support of a wealthy film widow, that drug might never have gotten into production. The overly wealthy could do something fine with all that excess, pay for the trials!
Hogwash! What is a cancer patient supposed to do.....lay in the bed and wait for death. What a crock. You have to have hope that you're going to live and beat this thing. I know one thing....I'd be trying to get as close to God as I could. Oh, I know, a bunch of you snail brains are too stupid to believe in God. Oh, excuse me, I guess I should have said Supreme Being. No...its God, get that? God with a capital G. I might as well tell you I'm a bible thumper too and a Pentecostal. I guess that makes me a Holy Roller don't it? Boy, being a Christian sure is fun. You oughta try it. You might even get saved and make it to Heaven.
Calling people names because they do not believe in God will not bring them any closer to accepting Jesus. As Christians, we must be loving, kind, faithful, true and forgiving even to those who don't believe. Why, because God created them just as he did you and I. Being condensending will only hurt them and not help. Thank you, God Bless and have a beautiful day.
nobody has anything to say about this?!? seriously? you guys will jump and attack when it comes to politics or relligion but when it comes to basic humanity........what.......you just shake your head and say 'that's so sad' COME ON!!!!!!!!!!
This is big pharma pushing oncologists pushing desperate patients to do hidieous and horrific things in the final days, weeks, months of their life
My partner's stage 4 liver cancer took him away three years ago. His oncologist pushed him to participate in one of their 'studies'. She filled his head with hope and promise but wouldn't look either of us in the eye. The blood poured out of his mouth and rectum and 15 blood transfusions later, they still wanted him to continue!
'Go down fighting' should not be defined as continuing down a path of futility. And if a pateint is being encouraged to 'go down fighting', that's just cruel
Could not agree more! Docs and big pharma are only looking for the $$$$. Not surprised the doc didn't look you in the eye because she was being paid $$$ for enrolling patients in these studies. And, earlier post, Cindy did not slander the researchers. These people are dedicated, it's the executives at Pharma who disregard "efficacous" treatments.
As a cancer surviver I believe in being as optimistic as one can be; it can't hurt. Others can beat cancer just as I did. Faith can't hurt either, it's when religion gets involved things deteriorate. Have yet to meet a Christian but I'm trying.
This is the most ridiculous and uninformed article I have read on MSNBC. Unfortunately, that is becoming a pattern on this news site. I'm tired of reading articles based on "reports" from "researchers" and "experts" and "sources who wish to remain anonymous becuse they are not authorized to speak to the media".
I lost both of my parents to cancer and this article is an insult to the struggle and decisions they faced in an effort to beat a disease that has a VERY high track record of killing everyone it infects. Cancer is evil and if stayng optimistic helps those who are fighting it in even the smallest way, then I say let them be optimistic. Whoever these "researchers" are, they are morons and need to find something better to do with their time along with the author of this article. This is not news.
I just lost my dad to cancer and I have to say the medical community is too focused on crushing peoples hope. For people with terminal cancer hope is all they have even if it is naive. What's the harm in someone hoping they will live longer than expected? Everyone repeatedly made sure he knew he was going to die (and when) despite his requests not to know how long he had to live. He did not want to go into hospice cause they wouldn't give him chemo in hospice. Everyone was pushing him into hospice like it was some panacea or magic bullet that would take all his pain away. I talked to the hospice nurses and they said they couldn't do anything different for his pain.
Newer anti-smoking ads try to make people see that the risks apply as much to them as anyone else.
My Mom died from lung cancer and that new ad they have with the man who talks about his wife dying of lung cancer at 46 really gets to me. Though my Mom was older the advertisement seems so realistic. I wonder if that guy is an actor or if his wife truly did die from lung cancer. If he's an actor, he's got me convinced.
I am a stage 4 colon cancer patient, I am currenly cancer free thanks to chemo. Let me tell you once you hit stage 4 (advanced) your chances of living past 5 years are around 8%! That is 8%! If cancer patients want to have too much optimism about anything they are fully entitled to it. If they want to participate in something they feel will help others down the road have at it. If they decide to lower the quality of life they have remaining so be it. Sounds to me like chemo has not helped these people so they turn to the trials, once you reach the point of chemo not working then what else do you want cancer patients to do? Go home and die?
As a cancer patient you are willing to try anything to beat it. ANYTHING! At one point I was more than willing to have a surgery that would pump heated chemotherapy into my mid section to fight the cancer that had spread from the original site. Fortunately the chemo (5fu and avastin) worked for me. Yes that is Avastin the drug that has been railed against as being too expensive.
I would hate to be Lynn Jansen and find out that someone did not participate in a trial for a drug that turns out to save a bunch of cancer patients and that person/people died as a result because of my study. To put it mildly this article blows.
My husband is a cancer survivor...diagnosed 2 years ago, went through a 10 hour surgery, and both chemo and radiation...although my husband wasn't in a drug trial nor was it appropriate for him to be in one, optimism has been our friend...it's helped us go ahead and plan out our lives in spite of cancer. I don't think that it EVER hurts to be optimistic...bah humbug to the author...he's full of caa caa.
I am a cancer survivor too. It was not any sort of higher than expected optimism that kept me down when my illness seemed to get the best of me, it was the red tape I had to go through to get treatment and pay for it some how. I mean I would be on the phone in my hospital room excusing myself to lean over and vomit in a bucket at the same time I was talking to insurance companies and medicaid explaining why I needed a different more expensive medication to control my vomiting. I was confident in my doctors and my will to live...it was the red tape that was threatening to kill me...It was far worse than the cancer.
I have watched Run From the Cure, very good video! There are over 1,000 patent applications at the U.S. Patents and Trademarks office for the healing cannabinoids in cannabis! I have made and used this medicine for other medical needs and it worked for that!
But according to the powers-that-be, that is engaging in "self medication", and we are not supposed to do that.
No, somewhere along the way, we gave up our antiquated ideas that we might know what is best for us and do that. Now we are more of less 'required' to do everything and anything at the orders of a doctor.
Plus, they can't make cannibinoid derivatives pay. But the name brand patent medicines they blow at us on TV at dinner time, now those are going to make us better..............and bankrupt.
From the several cancer patients I have known, hope is vital to their getting up every day and undergoing all that they do to preserve life, for however long it takes. It's what they wrap themselves in at night in order to sleep with a modicum of peace. All things in moderation, sure. But when it comes to hope in the face of cancer, I don't think there can be too much. We're all going to die anyway, so if we choose to die with hope in our hearts who is to say that is a bad thing?
I agree and I was quite put off at the title of this article. My Mom died from lung cancer and from the day she was diagnosed in July 2008 she was just a mess of pessimism. Don't know if optimism may have left her live longer, but I just can't believe it couldn't have hurt. Then again, she probably didn't want to live that way for very long.
If I ever get cancer, I'll be happy as twelve rainbows dancing on unicorns with all the prescription opiates I'll be *legally* sucking, shooting, snorting.
At least there's that.
I think this article and it's title were misleading. If there was no therapeutic benefit expected then why even test a treatment? It is being tested as a possible treatment, but in phase I they are checking the side affects. Many of these people have been given a death sentence already, to try something new makes sense if you want to live. Does the author want all the cancer patients to give up hope and go pick out their caskets? There are no guarantees in life about anything, hope is what keeps us going.
I would hope that anyone diagnosed with cancer would try all the treatments they can (including alternative medicines), instead of just giving up. Through the clinical trials new treatments come on the market every year.
I liked the comparison of cigarette smokers..... NOT! To compare high risk activities to seeking cancer treatments is frivilous and ridiculous.
Well said, lawful1...the last line of this article is the only one that really matters...
Hope is not a bad thing unless it comes with the price of a lower quality of life. The time for placebos is long gone. Drs. should not be making guinea pigs out of people in their most desperate of times. If the patient is not making preparations for their death, they should not be a test dummy.
It is all about the pharmaceutical companies getting free data from the most pitiful people in their time of need.
While it is truly good to have hope, false hope is what the story is complaining about. False hope can keep a person from using their last weeks or days to their (and their family's) best use. And false hope can make the difference between a peaceful and dignified end and a painful anxious end. And lastly, false hope can be used as a way of draining the last assets of an entire family into the pockets of the for-profit medical industry.
In early-phase testing, they are only looking to see if a drug will damage you more than it can possibly help you. If patients are seeing something difference, part of that is their own fault. But part of it is also the fault of, primarily MD's, who are running the clinical trial and not living up to their informed consent obligation. The choice is a) use existing therapies and shoot for a mostly pain free and dignified end, or b) try something with an extremely minute chance of benefit but only to establish its toxicity. Using false hope to lure people into the latter is reprehensible.
This country is facing a huge problem with pharmaceuticals and treatment that are incredibly expensive and do not provide any significant extension of life or improvement in quality of life. But physicians and drug companies emphasize how to shame families and patients into opting for these treatments --- "Don't you want the very best for your Dad?"
A good example is Aricept. It is a drug that supposedly helps with Alzheimers. But it does quite the opposite. It does statistically slow the progression if the disease by around 5 months. But then it stops working and the disease returns with a vengeance. In fact, when the drug is stopped, the disease advances by almost a year in the next 2-3 months. The net result is that Aricept actually causes the disease to advance more quickly overall. And Aricept costs about 14 times in this country what it costs in Canada.
This same sort of thing happens over and over with various surgeries, therapies, and drugs. The patient is offered false hope or the family is shamed into "demanding" the drug. All that happens is that the patient stays in the hospital with degraded quality of life while the family's assets are transferred to physicians and drug companies, and hospitals.
60% of all bankruptcies are caused by unanticipated medical bills. Of that 60%, 40% of the people had health insurance deemed "adequate." This is shameful. When did we decide that it was okay for drug companies to make an 8,000% profit ( see viz Aricept) from human misery by using false information and humiliation? The right wing, at the behest of the for-profit medical establishment, has made the whole issue toxic by shouting "rationing" and "death panels" at every opportunity.
IMHO everyone would be much better served by recognition that life is a finite experience and WILL end some day for everyone. And that a death at peace with minimal pain is a worthy and often attainable way to go. There should be a lot more emphasis on hospice --- low cost care that emphasizes comfort, emotional support, and realism about the future.
Luckily, my wife is a gerontologist and we have had sufficient pointed discussions about what each of us wants that I am sure that she can negotiate the mine field of greedy physicians, grasping hospitals, and valueless drugs and take care of me in a realistic and caring way when it comes to that. We have already incorporated into out Living Wills and Health Care Directives, the appropriate mechanism to immediately sue any physician or health care agency who tries to violate or disregard the Living Will as most try to do.
I think people are misunderstanding this article. These people participating in these trials have false hope. There isnt likely anything about these drugs to help them, and thats not the purpose for them signing up.
My Aunt battled cancer for quite some time, when it came back the 2nd time - she fought hard, as it spread she tried every new and cutting edge treatment available, including ones not even in trials yet. Then, as it spread to her brain and it became abundantly clear the end was there she had a choice:
The doctors offered to try more things, of course they did - they liked my aunts money. She was wealthy, and paying for all of this out of pocket mostly.
My aunt was a fighter, she never gave up on anything. But she chose not to fight reality anymore.
She opted to spend the last of her days with family and friends, for as long as she could. it was around July of 08 when she made this choice, at that point she was told she wasnt suppose to have much time lfet, maybe 3 months. My aunt didnt accept that, and was determine to live as long as possible. By september the pain was so bad she had to be medicated most of the time. By December she wasnt really with us anymore, mostly drugged to keep the pain at bay.
She finally left us in March.
I wonder, if these folks were told "you are not going to get better by participating in these trials, this is mostly for us and for our research" how many would participate. Im certain many would, because they want to help find answers for future generations.
But many others would probably choose to spend their final days without additional side affects and enjoy their time with family.
My aunt didnt slow down and spend time with family UNTIL she concluded the battle was over. Up til that point, she was still working and in denial that her life had been given a time table of 3-6 months.
People need to be properly informed about their choices...I cherish the time I spent with my aunt over that summer. I wouldnt have had those moments if she chose to keep battling.
This is so well written, and is exactly what happened to my Mom. The Doctors did indeed try to "shame" us, her family into an extremely toxic drug trial. She had weeks to live. She died from a toxic drug reaction. The entire story so very sad, but now my entire family wishes they had told the Doctors, No. I had a big fight at the time with my family over the drug trial, wishing she not be in it. I lost and so did my Mom. The worst part was how cold the Doctors in the trial were "she had nothing to lose she was going to die anyway in a matter of weeks, no matter what".
Yes, but now all her children and spouse can think of is I wish we had listened and taken her home to be warm and have tea with us all until that day. Instead of the cruel terrible painful toxic way she died in front of us all.
And from the few that I have known, those qualities are extremely admirable.
Too many people on here are misguided about early phase clinical trials and pharma companies. Let's not forget there are good and bad sides to every argument. If you don't want the treatment, don't sign up. It's an individual choice. Family may be against it, doctor may be pushing it, but when it comes to who signs the form, it's the patient (not the doc and not the family). Here's a thought...try to have these discussions with family members and care givers early on, before it comes down to experimental trials.
Yes, some (but not all) doctors are awful human beings that did not get into their profession out of altruism; I've personally met a few. Yes, big pharma will make a fortune if the drug is allowed on the market. Corruption is an increasing problem with these trials (especially ones done in impoverished nations) and the FDA turns a blind eye to a lot of it. That needs to be addressed pronto!
However, SOMEONE had to be among the 1st to try every single medication or treatment regimen we rely on today. It could have killed them quickly, slowly, or just not have helped them at all. It's a harsh reality, but reality none the less; someone had to take the risk so that millions would benefit (or be saved if the only lesson learned was "hey, in theory it should have worked but that stuff actually kills".)
Millions of people suffering from a variety of maladies are enduring an extremely low quality of life and they are praying that the next advancement isn't too late for them because they are hanging on by a thread and they can't do it for much longer.
I'm extremely grateful to the Canadian men and women that took the informed risks necessary for the medicine I am now on to make its way through trials. The therapies available at the time were not working for me, looking back I see that my quality of life was worse than I had realized at the time. For me there was a lot of pain, more surgery and eventual disability and an early death due to complications on the horizon, a year after becoming available in Canada my medicine hit the market in the US. Now my life expectancy is average again! More importantly, it's a life worth living! :-) There are some scary side effects of this stuff, every horrible thing listed actually happened to somebody during the trials and they endured that not knowing if it would ever amount to anything positive; but fortunately a greater number were helped than hurt.
While doing my due diligence and researching the drug before taking it I did find out that there was some misconduct on the part of the drug company. Canada has a national health care system and the drug maker was strong arming participants of the trial who wanted to remain on the drug to write letters to their representatives so that the drug would be given the necessary approval to be paid for by the national health system. It makes me angry to think about it happening and I'm still not thrilled about the fact that I'm giving money to the people who did this to the trial participants. (I was in their shoes at the time so it didn't take much imagination to figure out what it would mean for them if access to the drug was cut off) but if the incident was used as a reason for everyone to refuse to participate in other studies a lot of people will have been done a greater disservice.
If the medicine ever stops working for me as some therapies have been known to do, I know what misery I will be going back to. If I'm then given an opportunity to participate in a study I will do my due diligence and then I'll most likely roll the dice. I know that there is a great deal of danger involved but someone already took the risk and I have benefited from it for over a decade now; I would never judge someone who chose not to participate in a trial and I feel that they shouldn't be subjected to quilt or pressure, but paying it forward seems like the right thing for me to do.
Lots of people here who have never had cancer but are eager to dictate how others should deal with it.
Hubris, to say the least.
I submit that the time and money spent on this study would have been better spent on research that actually aims to cure cancer.
Every day the media reports some obscure study meant to convey the impression that our culture has all the answers. Yesterday it was "Marriage leads to increased happiness, health." For real, I swear. Remember when they told us butter was bad for you and everyone ran to oil-based spreads as the cure for--everything? Right, then another study comes out and says, yeah, no, those plant oils are much worse for you than butter. One week it's this, the next week that.
Here's my findings:
Irrelevant studies lead to money wasted that would be better spent on anything else.
Then that money should be given to oncologists like Simoncini in Italy who is curing cancer with a success rate of over 90 percent without drugs.
http://www.curenaturalicancro.com/
But these are the stories you never hear about because big pharma and the FDA say ONLY DRUGS can CURE anything. (and the method he is using can't be patented)
Cancer treatment is a scam and a multi-billion dollar cash cow in the US alone. Good luck getting a CURE from big pharma. They would have to be looking for one first, and they not.
The day I was diagnosed with lung cancer, I was ushered into the office of a doctor who was a principal investigator on a Phase I trial. He told my wife and I "the standard treatment isn't going to do a thing for you." A death sentance, right? Refusing to accept that, I got a second opinion. The team of doctors at the second cancer center recommended the standard treatment, and said "We're looking at a cure."
So I entered treatment, the totally standard protocol, and, indeed, there was no evidence of disease after a year after I finished thecourse radiation and chemotherapy. It is four and a half years later and I still shudder to think what would have happened if I had listened to the first doctor. It was a clear case of conflict of interest. He was having trouble finding qualified patients for his trial so it seemed he'd say anyting to scare them into enrolling. I followed that trial and it was determined that the drug they were experimenting with produced NO effect on lung cancer whatsoever.
I think that there was some sort of complicity on the part of the the powers that be, and maybe his fellow doctors at th ecancer center at which they worked. I'm not talking conspiracy, but how is it possible that he was doing what he did without a single person knowing and reporting his unethical behavior.
What I learned through this, and pass on to other cancer sufferers, is that you are your only reliable advocate, and to blindly leave the decisions to be made in the hands of others could be fatal.
@famousperson,
My wife is a PhD gerontologist who has worked in several Tier 1 Medical schools. She is a conscientious researcher whose field includes end-of-life issues. Finally, she is out of the medical school rat race and is a tenured full professor and center director in a Tier 1 university without a medical school.
What has surprised us is how money-oriented medical schools and the medical profession are. And the degree to which they pollute the ethics of other faculty within a university.
You have to consider a few things:
1) MD's, for the most part (around 62%) do not have a college degree of any sort. Instead they have a degree from a medical "school" that is vocational in nature. Not bad-mouthing the degree, just building a case. The absence of a real degree also means that their education is very lop-sided and much of the liberal arts education that would be required of even a BS in, say, biology is missing. And in the OJT than comprises much of their training, it is not even available. Most medical schools offer many times more courses in running the business side of a practice than in medical ethics.
2) MD's have zero to absolutely minimal training in research. They are not taught to design, conduct, or evaluate clinical trials. They simply have no skillset in this area unless they have gone to the trouble and considerable effort of adding an earned advanced degree and spending the trouble mastering their field. Yet medical research is dominated by physicians without the essential credentials.
3) A specialist MD requires about 5 years to graduate then another 3 years of OJT. His expectation is that he will hit the ground with over $250k a year to start. By contrast a PhD in a medical field takes an average of 9 years to graduate and then can expect another 15-20 years of post-doctoral work in progressively more responsible research before they can operate as a Principal Investigator (PI). And their starting pay as a PhD? Around $38k --- about what an intern makes.
4) Because MD's lack the knowledge and skillset to design, conduct, or evaluate clinical trials, they have to have others do the seriously difficult for them. This is usually done by the drug and medical equipment companies themselves. It isn't just a serious conflict of interest, but usually is physicians who rely entirely on the wrong people to do the hard work and lack even the basic skills to determine if it is being done correctly.
5) Over the course of the past 60 years or so, physicians have managed to elbow aside PhD's in critical research areas --- the CDCP, the FDA, and major medical schools among them. And they have brought along major ethics and conflict-of-interest issues as well. A case in point would be the FDA and the drug approval process. Since its founding, it has gone from a mostly PhD-staffed organization to a mostly MD-staffed organization. Its director is an MD, JD. FDA officers are required to disclose all financial ties to the for-profit medical industry. 80% have not done so. Of the 20% who have done so, about two-thirds have unresolved conflicts of interest. A good example is this guy, who I know personally:
http://blogs.wsj.com/health/2008/12/23/under-grassleys-glare-emorys-nemeroff-gives-up-psychiatry-chair/
I am glad that your story has a good outcome. I do not wish bad on anyone. But, unfortunately your story is all too common. And as far as your question goes, the reason that this sort of thing happens too often is that we have foxes guarding the medical hen houses. Until we reform medical research and get it back to pre-1960 levels, this is the sort of thing that can be expected.
And before people try to nail me: I believe that medicine is hugely important profession. I know many physicians who are good and caring people and who sincerely try to help people as their prime mover in life. But having an MD does not make you an expert in EVERY field and does not confer god-like qualities.
And, indeed, you are correct. The you are your best advocate and the smartest move in any medical situation such as yours is to become informed and aware in an honest and realistic fashion. The bottom line for cancer patients is that, since you are generally looking at a single disease process, it is remarkably easy and quick to educate yourself to the point that you know much more about your particular disease process than any physician you are likely to encounter.
End your life being a lab rat for the pharmaceutical companies. Nope, not me.
Side Note: Lab rats have a short life expectancy. Just saying....
Chris you bring up many good points especially #2-6. However please re-check #1. The BS Biology is just that, BS, because it's a guaranteed 4.0 track into med school. Meanwhile all the chem/biochem, bme, pharmacology, immuno, micro, etc. degrees are much harder to earn at the undergrad level and you're right...these are the people who go get PhD's rather than MDs and conduct research. In any case med schools will NOT admit you without a stellar GPA with an undergraduate degree in life sciences, with a competitive MCAT score, and usually several years experience/internship/volunteer work in a related field.
But I digress, to address your valid points (#2-6) the real problem is that here in our country we don't value MD's AND we don't value PhD's. You can see that by the numbers being graduated compared to abroad. If we don't trust doctors and ALSO don't trust researchers, where then does one place their trust? The internet a la WebMD? In America we all think we know best for ourselves and nobody takes advice from anybody else anymore. This mentality needs to be fixed before any progress can be made. I for one am fully for research-oriented solutions to medical problems. I want more PhD's on the IRB. I want PhD's to earn more, to have more incentives to innovate. But just as MD's aren't trained to conduct research, PhD's aren't trained to treat patients. So a level of trust must be established for the system to work, and right now, the trust ain't there for most people. Unfortunately most people listen to the awful headlines (written by journalists, not PhD's and not MD's) than dig for themselves. PubMed and clinicaltrials.gov are excellent resources.
Chris, you are misinformed. Doctors always have an undergrad degree before going to med school. It is a requirement of acceptance. Also, more and more of thm are majors in the Humanities and not science majors. Second, in my medical school I had at least three courses in medical ethics - and not one in business. I had to actively seek out training in how to run a medical practice - it's simply something they don't teach you in med school. Also, starting salaries are about half of what you mention. There are plenty of good, hardworking and compassionate docs out there. Stop maligning the medical profession!
More research on drugs, treatments, protocols that actually aim to cure cancer would be good. But that doesn't mean this study is not helpful, IMO.
Leaving aside the important facts that unrealistically optimistic patients in a Phase I trial may not get the pain care they need or be able to spend time left with their loved ones in the best possible manner, this study points out that unrealistic optimism can lead to skewed results which could wind up wasting even more money.
As this article reports, unrealistically optimistic patients in a Phase I trial (to test toxicity) may ignore or decline to report side effects. So, with skewed results, more money and time might be spent to run the next 2 phases when perhaps the drug shouldn't have gone past Phase I.
IMO it will be money-, time-, and life-saving in the long run to understand the effect of unrealistic expectations so that they can be re-set, and researchers, doctors, and the patients themselves are assured of fully-informed consent relative to both the study and how it might affect the patients' last days.
the sad thing about this article is that the drug studies are "only testing drug toxicity with no theraputic benefit for patients". So they are taking bodies which have already been subject to many poisons of chemo and further damaging them by putting potentially toxic drugs into them just to prove them non-toxic.
That's because healthy people wouldn't volunteer. I believe the treatment is indeed dangled as a "hope" for those whose other therapies have failed. it's no wonder those who agree have unrealistic expectations. The same racket is used to sell lottery tickets--everyone knows that the chance is miniscule, but as long as they can point to winners, people will keep buying.
You cannot sign otherwise healthy people up for a testing in a chemotherapy trial, or a new HIV regimen, etc.
The article states that the trials "only test toxicity of drugs and aren't intended to have a therapeutic benefit". Are the test subjects being told that since they are going to die anyway, we want to see if this drug kills you first and it won't have any effect on the cancer that is allready killing you? Sure the drug companies want people to have unrealistic hope, otherwise they wouldn't get as many people to sign up for the trial. I may be wrong but I don't think so, after all it's all about more profit for them.
Drug companies will profit and that's too bad since they seem to be run by evil bastards these days but the fact is that they are going to be in business as long as people can afford to pay for the drugs that improve their quality of life and even prolong it. Participants are absolutely supposed to be told that it could cause irreversible damage up to and including death (then they have to sign a form promising not to sue if it does).
There are many known cases of misconduct (officially they call it misconduct but I think evil is more accurate) in which participants were signed up under false pretenses, or it was know that they had completely misunderstood and thought that they were getting actual medical treatment. Most of this happens in third world countries where officials can be bought-off cheaper than ours can. Although, from just looking at some of the other comments it's clear that major misconduct is frequently happening here too.
The current system is rife with conflict of interest from start to finish. Extreme reform is desperately needed, just look at all the recalls! Really harmful stuff is being pushed through all of the trials and getting to the market with a big fat stamp of approval from the FDA.
Knowing all of the above there are some people that realize it's too late for them, they will absolutely not live to see another year pass or witness another milestone in a family members life. These people are generous enough to participate in these trials as a final gift to all humanity. The gift is precious even if the study concludes that the compound is toxic & of no therapeutic value because the faster our scientists know that they are on the wrong track, the quicker they can go back to the drawing board.
Having said that, due diligence is a must, you have to look out for yourself even when engaging in a selfless act! Research needs to be done to determine if there is a conflict between what is best for your doctor and what is best for you. Multiple opinions should be sought out and you should report any apparent misconduct you uncover to the authorities and any agency or association the doctor claims to be accredited by. Granted, you may not have a lot of fight left in you if you are sick enough for it to be plausible when someone says "you're dying" but helping to weed out the corrupt sounds like another gift to all humanity.
Thats Phase I trials. I believe in Phase III, there is more optimism for outcomes. These are somewhat proven trials (at least that's the way it was explained to me). It beats the heck out of being told you have 14 months and nothing will buy you more than a few months. My oncologist told me that so for 8 months I just lived life. When I finally decided to try clinical trials, my cancer cells dropped 46.8% in 3 months. Sure glad I stopped listening to my first oncologist!!!
"Even though patients are given an informed consent...". Are they read this information, or is it just like anything else today, "Just sign here". I have lost my wife to cancer. Everything I read about alternative cancer tretments were pooh-poohed by the doctor. Lots of money in prolonged killer chemo therapy. She was a pathetic case for 2 days after her treatments, and progressively got worse and just gave up after 6 months of total pain, ande finally succumbed. I hope that doctor bought a leaky sailboat with all the money he made at her expense.
I am with you on this, they put my husbands first wife through hell and tested her and poked her and took away anything she could have had in life by making her miserable till her death. Life is a terminal illness and I will die from something, I will not be taking cancer treatments and neither will my husband. Watch run from the cure on youtube. That is my plan if I am diagnosed with any disease.
Cancer treatment is the financial support of the drug companies.
I can remember one of those "New Age" people, whose name I will refrain from using, who I cannot quote the sums of money they earned but I would assume it was millions. The individual preached how you could essentially cure yourself through attitude adjustment and positive thinking and I believe it was essentially implied if you became ill with something like this it was your "thinking" that caused it. What a c-r-o-c-k. I had a good friend who became tragically ill in his twenties and clung to false hope via that message and went to his grave thinking the reason he was dying was "his fault" because his "thinking was wrong". What a cruel false message for someone to deliver to others. The cold hard facts are very hard to face. I think to that documentary on Farah Fawcett's journey through cancer treatment. It was as if that poor beautiful woman was introduced to a house of horrors and a torture chamber. How brave, but how tragic.
I believe the mind is an incredibly powerful thing and that with the right attitude there is not a lot the human body can't handle. However, for cancer patiets its tough to stay upbeat and positive when slogging through chemo or radiation on a regular basis. It's terrible to think that the effects of some cancer drugs make patients feel sicker than the cancer itself...
And finally, MSNBC should stop posting articles like this. Optimism never killed anyone. I certainly wouldn't fight cancer with the attitude that it's going to beat me. At that point I might as well give up...
I am a lung cancer patient and went thru surgery and chemo. I didn't find chemo all that bad, they give you drugs to prevent nausea. All I felt was tired but I attribute part of that to recovery from surgery. My attitude is , it is what it is and I live my life. I don't think about my cancer except when I have to have a scan and wait to find out if I am still cancer free. I don't know if I'll beat it but I will embrace every day.
There have been experiments, accepted and replicated by the medical and scientific community, that prove that positive thinking PLUS proper treatment (operating, chemotherapy, radiation, laser knife) can prolong a cancer sufferer's life. At the very least, it improves ones quality of life.
There is a catch-22, though. The belief in positive thinking, as touted by its advocates, seems to go along with the philosophy that somehow, the disease IS YOUR FAULT. That I never bought into. When I had lung cancer, I kept a positive, even rosy, outlook but never bought into that negative philosophy.
Positive thinking and being one's own advocate, meaning educate yourself and analyze everything you're told is the key to survival, whether for a normal lifetime, as in my case,, or a few more months. Whatever you do, don't buy into the BS that the principle investigater of a drug trial, especially Phase I or II, has a vested interest is pushing on you. It's completely unethical, but it happens. I know, because it happened to me. I refused to accept a death dentance "unless [I] participated in the trial", and went for the standard treatment recommended by the doctors I went to for a second opinion..
I can't help but think that my positive thinking, as well as my being my own best advocate, is what led to the cure and the fact that I'm alive 4 1/2 years later.
Wow! This article is really poorly titled. As somebody who is in the alternative medicine field and has done a great deal of research into mind-body healing, this article would lead one to believe that optimism is detrimental to the healing process. In fact it has to do with pharmaceutical drugs and their trials being "successful or not". Jon Kabat-Zinn and others have done research for years on this topic with great success. Here in Madison, the Center for Healthy Minds uncovers more daily about the power of the mind and how this can, in fact, change the body. Shame on MSNBC for printing an article that takes away hope from cancer patients instead of titling this article more responsibly.
........ too many people world wide are making huge sums of money treating cancer patients ...... as a widower of a cancer victim , i cant see them giving up all the millions and millions made from cancer patients .......
Which is exactly why no cure for cancer has been discovered......or has it?
For those who seem to be incredibly hostile toward anyone making money from treating cancer: would you rather no one treat cancer because they might make some money doing so? Having been a research nurse in Phase I and Phase II clinical trials for terminal cancer patients, I know many patients who weren't particularly optimistic about their fate, but graciously consented to be study subjects. Many died, but more than a few lived longer than expected and several are alive and well with good quality of life, though not 'cured', today! When it comes to cancer, it's all in the genes and finding specific targeted therapies and that costs money - a lot of it.
Cindy - you should think before you post. You just slurred the 1000's and 1000's of dedicated research scientists and doctors with your moronic post. The idea that all these people, who spent years and years obtaining advanced degrees, are all in a giant conspiracy to make money is beyond stupid. Seriously. It beggars belief that anyone could opine such crass libelous idiocy.
No, Ivanho, you don't get how it works. Thousands and thousands of dedicated researchers spend their lives working on understanding of and cures for cancer, but getting their findings to the trial Phases, much less putting the results of their dedicated research on the market, is, I strongly believe, thwarted both by government, who in trying to protect us frequently do us grave disservice, and the greed of Big Pharma.
Ivan - seriously have you ever heard of the federal government? Do you have any idea how powerful pharmaceutical companies are?
I'm not putting down the researchers. I have no doubt they're working hard to find the cure, but I believe the cure has already been found.
Cindy and famousperson are right. Think of how many jobs would be lost (insurance company personnel, hospital workers, oncologists, radiologists, pharmaceutical company workers, etc.) if a cure for cancer -- or any other chronic disease, for that matter -- were found, publicized, and made available to the general public. Think of the billions of dollars that would be lost every year on just chemo drugs and radiation treatment if there were no more cancer. It's much more lucrative to "manage" disease than to "cure" disease. Management = a lifetime (however long or short) of contributing to the bank accounts of the medical and pharmaceutical industries. It's all about job security, I'm afraid.
I wish I could remember where I saw it so that I could post a link but a few years ago communication was leaked in which a pharmaceutical executive wrote that his goal wasn't to cure cancer but to see cancer turned into a chronic ailment which can be managed, such as diabetes or asthma. ...yep, greed is that powerful.
We may never know if a cure has already been withheld.
I can't see why people assume that jobs would be lost if a cure was found, folks would still fall ill with cancer except they would be able to treat it and move on. Drug manufacturers would doubtless charge a fortune for it too.
There are hundreds of illnesses for which virtually no research is being done because there isn't enough funding for it all. If cancer was out of the picture we would all breathe a huge sigh of relief and then instantly start worrying about the next most common "incurable" disease. The "big C" would be something else and the army of scientists, consultants, physicians and care givers would redirect their efforts toward the new "big C".
Martin Snyder: what makes you a fn expert on these trials???? Another know it all making posts with little or NO expertise!!!
Hope nor optimism has ever hurt anybody.
You need it to survive.
It would be important to me to do everything I could. Then I could accept the final outcome better. Also, I choose to live with some hope. For me, acceptance follows hope and effort. Hope is an element of "what I could do". A realistic representation is necessary, but it is also meaningful to tell the patients that in the long run, they are helping others. Hope, effort and feeling a part of all others will lay the foundation for acceptance. This scenario beats facing a meaningless death.
Too much optimism? There are greater problems to be addressed in this venue of healing.
Hope is a hard thing to hold onto when they are shoving a port into your chest and dripping a $16,000 per dose drug(poison) into your body. I know several people who were saved by trials and others I have buried who tried everything the wallet would pay for, alternatives included. As a current survivor, I don't know what the answer is, but I do know hope returns with a vengeance and you somehow demand more of life because you have come so damn close to the end of it. Trials can eventually save or extend life - I am here due to a drug called Herceptin, no picnic but without the financial support of a wealthy film widow, that drug might never have gotten into production. The overly wealthy could do something fine with all that excess, pay for the trials!
Hogwash! What is a cancer patient supposed to do.....lay in the bed and wait for death. What a crock. You have to have hope that you're going to live and beat this thing. I know one thing....I'd be trying to get as close to God as I could. Oh, I know, a bunch of you snail brains are too stupid to believe in God. Oh, excuse me, I guess I should have said Supreme Being. No...its God, get that? God with a capital G. I might as well tell you I'm a bible thumper too and a Pentecostal. I guess that makes me a Holy Roller don't it? Boy, being a Christian sure is fun. You oughta try it. You might even get saved and make it to Heaven.
God Bless you! Being a Christian is fun in ALL circumstances!
Calling people names because they do not believe in God will not bring them any closer to accepting Jesus. As Christians, we must be loving, kind, faithful, true and forgiving even to those who don't believe. Why, because God created them just as he did you and I. Being condensending will only hurt them and not help. Thank you, God Bless and have a beautiful day.
If being a Christian fills me with as much anger and hate as Stratman, I think I will pass.
nobody has anything to say about this?!? seriously? you guys will jump and attack when it comes to politics or relligion but when it comes to basic humanity........what.......you just shake your head and say 'that's so sad' COME ON!!!!!!!!!!
This is big pharma pushing oncologists pushing desperate patients to do hidieous and horrific things in the final days, weeks, months of their life
My partner's stage 4 liver cancer took him away three years ago. His oncologist pushed him to participate in one of their 'studies'. She filled his head with hope and promise but wouldn't look either of us in the eye. The blood poured out of his mouth and rectum and 15 blood transfusions later, they still wanted him to continue!
'Go down fighting' should not be defined as continuing down a path of futility. And if a pateint is being encouraged to 'go down fighting', that's just cruel
Could not agree more! Docs and big pharma are only looking for the $$$$. Not surprised the doc didn't look you in the eye because she was being paid $$$ for enrolling patients in these studies. And, earlier post, Cindy did not slander the researchers. These people are dedicated, it's the executives at Pharma who disregard "efficacous" treatments.
As a cancer surviver I believe in being as optimistic as one can be; it can't hurt. Others can beat cancer just as I did. Faith can't hurt either, it's when religion gets involved things deteriorate. Have yet to meet a Christian but I'm trying.
This is the most ridiculous and uninformed article I have read on MSNBC. Unfortunately, that is becoming a pattern on this news site. I'm tired of reading articles based on "reports" from "researchers" and "experts" and "sources who wish to remain anonymous becuse they are not authorized to speak to the media".
I lost both of my parents to cancer and this article is an insult to the struggle and decisions they faced in an effort to beat a disease that has a VERY high track record of killing everyone it infects. Cancer is evil and if stayng optimistic helps those who are fighting it in even the smallest way, then I say let them be optimistic. Whoever these "researchers" are, they are morons and need to find something better to do with their time along with the author of this article. This is not news.
I just lost my dad to cancer and I have to say the medical community is too focused on crushing peoples hope. For people with terminal cancer hope is all they have even if it is naive. What's the harm in someone hoping they will live longer than expected? Everyone repeatedly made sure he knew he was going to die (and when) despite his requests not to know how long he had to live. He did not want to go into hospice cause they wouldn't give him chemo in hospice. Everyone was pushing him into hospice like it was some panacea or magic bullet that would take all his pain away. I talked to the hospice nurses and they said they couldn't do anything different for his pain.
Jack, I'm sorry for your loss. That's a tough thing to go through...
Another daily installment of the bad health news
My Mom died from lung cancer and that new ad they have with the man who talks about his wife dying of lung cancer at 46 really gets to me. Though my Mom was older the advertisement seems so realistic. I wonder if that guy is an actor or if his wife truly did die from lung cancer. If he's an actor, he's got me convinced.
I am a stage 4 colon cancer patient, I am currenly cancer free thanks to chemo. Let me tell you once you hit stage 4 (advanced) your chances of living past 5 years are around 8%! That is 8%! If cancer patients want to have too much optimism about anything they are fully entitled to it. If they want to participate in something they feel will help others down the road have at it. If they decide to lower the quality of life they have remaining so be it. Sounds to me like chemo has not helped these people so they turn to the trials, once you reach the point of chemo not working then what else do you want cancer patients to do? Go home and die?
As a cancer patient you are willing to try anything to beat it. ANYTHING! At one point I was more than willing to have a surgery that would pump heated chemotherapy into my mid section to fight the cancer that had spread from the original site. Fortunately the chemo (5fu and avastin) worked for me. Yes that is Avastin the drug that has been railed against as being too expensive.
I would hate to be Lynn Jansen and find out that someone did not participate in a trial for a drug that turns out to save a bunch of cancer patients and that person/people died as a result because of my study. To put it mildly this article blows.
GOOD FOR YOU!!!!!
Thanks MSNBC for popping the bubble of the optimistic cancer patient, whats next slaughtering puppies?
You go girl!
Amen, for some Hope and Faith is all they have!
My husband is a cancer survivor...diagnosed 2 years ago, went through a 10 hour surgery, and both chemo and radiation...although my husband wasn't in a drug trial nor was it appropriate for him to be in one, optimism has been our friend...it's helped us go ahead and plan out our lives in spite of cancer. I don't think that it EVER hurts to be optimistic...bah humbug to the author...he's full of caa caa.
They have CANCER, they can be as optimistic as they want. This is a stupid article.
I am a cancer survivor too. It was not any sort of higher than expected optimism that kept me down when my illness seemed to get the best of me, it was the red tape I had to go through to get treatment and pay for it some how. I mean I would be on the phone in my hospital room excusing myself to lean over and vomit in a bucket at the same time I was talking to insurance companies and medicaid explaining why I needed a different more expensive medication to control my vomiting. I was confident in my doctors and my will to live...it was the red tape that was threatening to kill me...It was far worse than the cancer.
What happens if you get cancer and don't have insurance? All the hope or lack of hope won't save you.
I have watched Run From the Cure, very good video! There are over 1,000 patent applications at the U.S. Patents and Trademarks office for the healing cannabinoids in cannabis! I have made and used this medicine for other medical needs and it worked for that!
Yes.
But according to the powers-that-be, that is engaging in "self medication", and we are not supposed to do that.
No, somewhere along the way, we gave up our antiquated ideas that we might know what is best for us and do that. Now we are more of less 'required' to do everything and anything at the orders of a doctor.
Plus, they can't make cannibinoid derivatives pay. But the name brand patent medicines they blow at us on TV at dinner time, now those are going to make us better..............and bankrupt.