sheilaincali
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Post by sheilaincali on Sept 25, 2013 14:20:27 GMT -5
I get a lot of stuff in the mail requesting I donate money to help find a cure for cancer. I don't have any facts or figures, but the amount of money donated and spent on trying to find a cure must be staggering, and yet we don't have a cure yet. So is there any point in donating money to medical research, where the past 20+ years haven't yielded any results? From what I understand of the disease, it's caused when cells don't divide properly. So the cause must be some inherant flaw in our DNA, or other basic cellular properties. How can you "cure" something like that? Maybe someone who knows more about biology than I do can comment? This was Phoenix's first post for this thread. By starting off saying he gets stuff in the mail requesting donations I assume it's a fundraising drive and not Big Pharma soliciting funds and encouraging him to buy stock. I'm not a big fan of Komen and some of their practices so I'll admit that sours me some and influences my opinion. I am big enough to admit that reading posts from medical researchers (such as Honey, Drama and Mich) have changed my opinions some. I'm still skeptical but will try to keep a more open mind.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Sept 25, 2013 14:28:36 GMT -5
Somebody posted in another charity thread a watchdog site that reveals how much of funds raised goes to the actual cause vs how much goes into the pockets of the charity. It was an eye opener.
People (in general) always go off on ME about research money like I'm standing on the street corner with a tin can asking for alms. That's not remotely the case, I have no control over how much money we get or from where. Nor do I have any say how much money a charity raises.
There are flaws on this side too but before people jump on the "You got $20 million from Komen why haven't you cured cancer yet!" bandwagon people should REALLY investigate how much of that $20 million went to research.
Charities are a business and like any other business they want/need to make money. That "Think pink" campagin isn't exactly cheap and they need funds from somewhere. . .
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Phoenix84
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Post by Phoenix84 on Sept 25, 2013 14:29:32 GMT -5
Just curious.
From what I'm getting, research is not a field where you can get definitive results in a set timeframe. However, I am curious as to what expectations there are when a researcher gets a grant. If a person/organization/company or whatever gives a grant, is there any sort of expectation of results? Or do they just give you the money and say "have fun" and not follow up on the progress? What happens if the researcher doesn't come up with any viable results?
But I can also see going into a study expecting certain results kind of defeats the whole purpose of doing science.
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sheilaincali
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Post by sheilaincali on Sept 25, 2013 14:31:55 GMT -5
Google "Profits for Big Pharma" and the first articles that pop up are about $711 Billion in profits for the past ten years and complaints about them for fraud to Medicare. So at $711 billion over 10 years you are looking at $71 billion a year in profit. Average it out and say $7 billion per big company per year in profit (just averaging to make numbers easier). A $20 million is a lot of money don't get me wrong. But with profits of $7 billion a year that's not exactly a huge percentage being allocated to research.
Maybe I'm looking at it wrong. When our accountant figures our profit at the end of the year she essentially subtracts our expenses from our revenue and in theory what's left should be our profit. I would assume that Big Pharma is including the costs of their labs and staff in with their operating expenses. So by that theory their $7 billion per company annual profit is AFTER research? If I'm wrong I apologize, I'm used to dealing with much smaller companies and $ amounts.
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Post by The Walk of the Penguin Mich on Sept 25, 2013 14:32:07 GMT -5
There are flaws on this side too but before people jump on the "You got $20 million from Komen why haven't you cured cancer yet!" bandwagon people should REALLY investigate how much of that $20 million went to research.
And what KIND of research. Also included is sociological research, behavioral, etc. none of which is remotely associated with basic scientific research that looks at the physiological causes of disease, but falls under 'research' auspices.
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Post by The Walk of the Penguin Mich on Sept 25, 2013 14:41:47 GMT -5
From what I'm getting, research is not a field where you can get definitive results in a set timeframe. However, I am curious as to what expectations there are when a researcher gets a grant. If a person/organization/company or whatever gives a grant, is there any sort of expectation of results? Or do they just give you the money and say "have fun" and not follow up on the progress? What happens if the researcher doesn't come up with any viable results?
To start with, when you submit a grant you have to have some preliminary research that you have done in order to acquire enough data to put together a grant with a subject of interest. That means that we are always working ahead of the game and some of the money from a current grant gets siphoned off to try to set ourselves up for future grants. Usually what happens is that we find something while looking for something else and expand upon it with a bit more research on the side...so the subject is usually the same, but just another aspect that we hadn't considered before.
When we receive a grant, there is a set of specific aims that we must perform....usually about 3-4 of them. During that time, it is expected that you submit progress reports and submit abstracts for professional meetings for presentation. Normally, it takes almost a year from the time where you receive a grant to the point where you have enough data in order to do anything with it (a lot depends upon the grant though). For instance, in one of our clinical grants, we acquired subjects at the rate of about 2/week. For me to do any work, I need at least 120 samples to work with, so it takes time. So there is a lag period where there is development of the research (putting together assays and making sure how they work), acquiring subjects, and acquiring additional staff (depending upon the size of the study).
I can't ever remember a time where we never had any results. Realize, negative results are results that get presented as well and you have to spin it such that we looked at these parameters and did not find significance. Before I got sick, I submitted an abstract that had ONE analyte out of the dozen promising ones (from the preliminary data from the grant submission) that wound up being significant. It was not the one we expected and the second study we wound up changing what we were looking at.
But there is a LOT of follow up and paperwork.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Sept 25, 2013 14:42:20 GMT -5
However, I am curious as to what expectations there are when a researcher gets a grant. If a person/organization/company or whatever gives a grant, is there any sort of expectation of results
Yes there is we don't get money and are told to "have fun". Depending on what type of grant/funding we are on a time table to produce results. If we're not showing any kind of progress our funds can be yanked. You also usually have to present and publish so many times a year to keep your funding.
Science, again, is not like a math equation where 2+2 = 4 and that's that. I'm not always going to get the results I am looking for.
But I CAN and have to, get results of some sort that can be published and potenitally lead to future research projects.
I'll give you an example of a project I'm doing. I'm working on figuring out the pharmacokinetics (how fast/slow a drug clears) in patients on Sustained Slow Efficiency Dialysis. It's a fairly recent (as in ~10 years old) technique and not a lot is known about drug clearance.
So I take the samples, run them thru the HPLC and measure how much of the drug is clearing the system during multiple time points both on and off SLED.
We know based on X, Y and Z that this drug clears at this rate on other forms of dialysis so we can make a guess on the outcome but I can't be assured that's the case, that's what I'm testing. We cannot tell you exactly what the outcome will be.
My results will provide future/current researchers with information that they can then build off of and test. The goal is eventually to develop an effective therpeutic drug model for people on SLED.
To keep our funding I have to meet certain production goals and my boss needs to present a poster/abstract/paper in a certain time frame. I cannot sit on my hiney and just collect my paycheck and neither can my boss.
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whoami
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Post by whoami on Sept 25, 2013 14:48:07 GMT -5
Considering how many hospitals/practices there are out there that specialize in cancer treatments, I doubt very much a cure will ever happen. All we'll ever get is ever-more-expensive treatments, which we will still have to pay for even if we helped pay for the research. Its a nice setup for the players involved, really... Except the people with the disease of course.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Sept 25, 2013 14:52:45 GMT -5
Thought of another one. I have another acid reflux drug I need to test and I've been given a 2 week deadline to complete running the samples. This is paying part of my salary so if I don't get my butt in gear I'm in trouble. No funding means no salary for me.
What the results will be we don't know that remains to be seen. I'm not expected to get a specific result with this at least as far as I know.
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justme
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Post by justme on Sept 25, 2013 14:54:29 GMT -5
Yes, big pharma make some pretty big profits, but the also take some pretty outstanding risks. And bigger risk leads to bigger rewards - unless you fail. This article says only 1 in 5,000 drugs makes it to market www.medicinenet.com/script/main/art.asp?articlekey=9877This has only 1 in 10 drugs making it to market AFTER it's already made it to human trials (and also some interesting info but I didn't read through the whole thing) www.forbes.com/sites/matthewherper/2012/02/10/the-truly-staggering-cost-of-inventing-new-drugs/ETA That's a rather risky business to be in and a lot of capital up front needed. I definitely wouldn't choose to be in that business! Ok, maybe jumping into one of the well known companies, but that's only because they have the money to reinvest (profits) to fund new drugs so they're always researching a lot hoping 1 will pay for the others that failed.
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Blonde Granny
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Post by Blonde Granny on Sept 25, 2013 15:28:24 GMT -5
I have to wade into the fray here. IMHO, the OP failed to say what was the definition of CURE. It is being cancer free for 2 years, or 5, 10 etc.?
I am a 20 year survivor of Stage 2 breast cancer. I had to different types of cancer, in the same breast, one sitting directly on top of the other.
Due to agressive surgery, followed by very agressive chemo therapy, for my definiton, I'm cured.
Many brave ladies, smart and willing research people all helped to give me my current 20 years. Because of the research, my chemo was a clinical trial (still used today), I volunteered for a double blind clinical trial of a drug call Femara/Letrozol, then due to being on the placebo for a couple of years, when the trial was ended early because of outstanding results, I was given the drug free for another 5 years.
So for me, those with the snarky remarks will be fortunate if they or none of their loved ones ever have this vile disease. After all, they think no advances have been made and giving money for research is pointless.
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Angel!
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Post by Angel! on Sept 25, 2013 16:37:31 GMT -5
How scary to be in a double blind trial . I'm glad it worked out so well for you!
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Post by The Walk of the Penguin Mich on Sept 25, 2013 16:54:30 GMT -5
How scary to be in a double blind trial . I'm glad it worked out so well for you! A placebo trial in cancer studies is the standard current treatment of the time, so the patient is not receiving nothing. To do otherwise is considered unethical.
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Blonde Granny
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Post by Blonde Granny on Sept 25, 2013 17:01:04 GMT -5
In order to qualify for the study, you had to be at 5 years post Tamoxifen. I was on it for about 2 years when the study was pulled to due exceptionally positive results on the drug Femara.
I admit though, finishing the tamoxifen was like Linus giving up his blanket, it had become my security blanket in that I felt I was still actively fighting against a recurrence. Finding out I was on the placebo was a little like Lucy pulling away the football. Things were then out of my hands and have been for many years.
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HoneyBBQ
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Post by HoneyBBQ on Sept 25, 2013 17:20:29 GMT -5
How scary to be in a double blind trial . I'm glad it worked out so well for you! A placebo trial in cancer studies is the standard current treatment of the time, so the patient is not receiving nothing. To do otherwise is considered unethical. Er... that's not what double blind is though. Placebo or control arm, yes, that's common. Double blind - MD and patient blind - that is more rare. I have only been involved in one in my career and it was strange. Wait.. I'm not sure who is confused, but there's some confusion here, including me lol.
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Angel!
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Post by Angel! on Sept 25, 2013 17:23:14 GMT -5
How scary to be in a double blind trial . I'm glad it worked out so well for you! A placebo trial in cancer studies is the standard current treatment of the time, so the patient is not receiving nothing. To do otherwise is considered unethical. I'm sure, I don't doubt that it is necessary when testing drugs. I just mean as a patient it would be scary. You don't know the success of the drug and then you don't even know if you are receiving the drug. Moreso if you are extremely ill and need treatment, not knowing if you are really getting the treatment would have to be hard.
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Angel!
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Post by Angel! on Sept 25, 2013 17:24:58 GMT -5
A placebo trial in cancer studies is the standard current treatment of the time, so the patient is not receiving nothing. To do otherwise is considered unethical. Er... that's not what double blind is though. Placebo or control arm, yes, that's common. Double blind - MD and patient blind - that is more rare. I have only been involved in one in my career and it was strange. Wait.. I'm not sure who is confused, but there's some confusion here, including me lol. I thought she just meant someone had to get a placebo and that blind studies are a necessity. Maybe I am confused
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Phoenix84
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Post by Phoenix84 on Sept 25, 2013 17:37:05 GMT -5
My results will provide future/current researchers with information that they can then build off of and test. The goal is eventually to develop an effective therpeutic drug model for people on SLED.
And you'll be immortalized along with the other great minds of science, like Albert Einstein and Stephen Hawking, maybe even get a nobel prize out of it. And make meeeelions.
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Phoenix84
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Post by Phoenix84 on Sept 25, 2013 17:41:18 GMT -5
Regarding being a test subject, I have no moral objection to it. I partook in psychology experiments when I was in college. The problem is I don't have the time for it. When you work a full time job, you can't necessarily get off work to go and partake in the study, especially if it's long term.
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HoneyBBQ
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Post by HoneyBBQ on Sept 25, 2013 17:47:09 GMT -5
Er... that's not what double blind is though. Placebo or control arm, yes, that's common. Double blind - MD and patient blind - that is more rare. I have only been involved in one in my career and it was strange. Wait.. I'm not sure who is confused, but there's some confusion here, including me lol. I thought she just meant someone had to get a placebo and that blind studies are a necessity. Maybe I am confused Well blindness not exactly related to placebo. Many studies have 2 arms - a placebo (or control arm) and the test arm. The study may be single blind, which means the patient doesn't know which arm they are getting. This is the most common in clinical trials that have blindness involved. A study that is double blind means neither the patient NOR prescribing physician know which arm the patient is getting. For example, if you're trying a new injectable drug, the syringe will not be labeled such that the physician administering it doesn't know what he or she is injecting. It allows for unbiased assessment of patient response. Most studies are not blind in any way. It's very hard to assure blindness and can be borderline unethical so they are very difficult to conduct appropriately.
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Jaguar
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Post by Jaguar on Sept 25, 2013 17:48:58 GMT -5
I'm a research patient and I have been one for 43 years. Right now I'm involved with some 3 study's or drug treatments.
Funny enough when I was a child my hematologist told my mom, to be careful of which doctors she let have my case cause they would want to figure me out and become millionaires.
I have a very rare blood disorder and I have something different and of unknown origins in my DNA, it's been seen in only 1 other case. Science isn't even scraping the bottom in trying to figure my case out.
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Blonde Granny
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Post by Blonde Granny on Sept 25, 2013 17:55:53 GMT -5
This was what it was: Study was done for North America and patients from USA and Canada were participants. There was a total of 5000 women involved. The study was done (for lack of what to call it) and was based in Canada. I was a participant from Omaha, NE. Neither the clinical trial staff at the hospital did not have info regarding which patient was receiving the drug or the placebo. My oncologist also had NO knowledge of patient status. There was about a 10 page initial questionaire to fill out, and everyone had to be 5 years post tamoxifen. Every few months (maybe 6) we received another long questionaire along with our 6 mo supply of pills. Here is the link to the study...it was done in 2003. www.cancer.gov/newscenter/qa/2003/letrozoletamoxifenqandAon edit: I was blessed to be able to give back in the only way I knew how, to all the brave women who went before me. If my strength and hope can help one person.....then I have done my job.
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Post by The Walk of the Penguin Mich on Sept 25, 2013 18:53:04 GMT -5
A study that is double blind means neither the patient NOR prescribing physician know which arm the patient is getting. For example, if you're trying a new injectable drug, the syringe will not be labeled such that the physician administering it doesn't know what he or she is injecting. It allows for unbiased assessment of patient response.
Most studies are not blind in any way. It's very hard to assure blindness and can be borderline unethical so they are very difficult to conduct appropriately.
The study we did on monkey's was double blind. We had absolutely no idea as to which drugs the monkeys were given. However, about halfway through the study, it was very easy to see what the placebo group was from the data.
The PUFA study we did was also double blinded. That was a human trial we did and the drug company we used provided the drugs. Data wasn't as clear cut that way, we didn't know what either group was until the study was over.
In the lab, I'm always blinded and don't generally find out the groupings until the end. The last batch of data I worked with before I got sick was a gestational diabetes study and from that data, I had a pretty good idea as to which patient was in what group, and we were only about halfway through the study. I'll be interested in seeing how that study falls out.
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zibazinski
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Post by zibazinski on Sept 26, 2013 7:34:36 GMT -5
I did Komen once then figured out what it's about. The are many good cancer organizations to donate to, that is not one of them.
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Post by The Walk of the Penguin Mich on Sept 26, 2013 9:44:53 GMT -5
Not long after I started (I was doing cancer research then) I rolled into my apartment at 9 pm. The whole week had been a series of 16 hour days, and I was utterly exhausted and wanted dinner. Only problem was that my favorite take out place was closed, fridge was empty and I really was too tired to go grocery shopping. While waiting for my last time point, I calculated that I could make more money at Rotten Ronnie's, that my salary was less than min wage.
The phone rang and it was a cancer organization, wanting me to do my job for cancer research and collect money for them from my building. That wording just really rankled to me and I went ballistic on the caller, and hung up on them.
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HoneyBBQ
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Post by HoneyBBQ on Sept 26, 2013 11:38:21 GMT -5
Mich - maybe there are more double blind studies in the labs with animals.
With humans... it's super rare. It's hard enough to get patient enrolled in trials where there are two arms and open - getting patients enrolled where they don't know what their treatment is and their doctor doesn't either.... near impossible!!
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Post by Deleted on Sept 26, 2013 12:59:42 GMT -5
with both parents dying from cancer, i found out much more than i wanted to about it mother died from brain cancer, and father from lymphoma of the lungs one of the things we requested from friends, family, etc were donations to a cancer research facility instead of flowers, etc great site here......http://www.charitynavigator.org/ will cancer ever be completely cured..... i know losing a cousin, an uncle, and now both parents to 4 different cancers tells me we have a long way to go but i also know research is the only way we are going to get closer
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The Captain
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Post by The Captain on Sept 26, 2013 13:10:26 GMT -5
Regarding being a test subject, I have no moral objection to it. I partook in psychology experiments when I was in college. The problem is I don't have the time for it. When you work a full time job, you can't necessarily get off work to go and partake in the study, especially if it's long term. Ahhh, that explains it.
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Gardening Grandma
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Post by Gardening Grandma on Sept 26, 2013 13:16:25 GMT -5
I would like to thank phoenix for starting this very informative thread about a very timely (for me) subject.
Also thank you to honeybbq, DQ and mich for all of the information they provided (in terms a layperson could understand)
And a huge thank you to those participants in studies; kent, BG, sugilite and anyone I missed.
Thanks for that link, gdgyva
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Phoenix84
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Post by Phoenix84 on Sept 26, 2013 13:41:12 GMT -5
Regarding being a test subject, I have no moral objection to it. I partook in psychology experiments when I was in college. The problem is I don't have the time for it. When you work a full time job, you can't necessarily get off work to go and partake in the study, especially if it's long term. Ahhh, that explains it. Uh huh. To be fair, we were required to for my psychology class.
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