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Lack of Volunteers for Cancer Studies


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Doctors Grapple With Lack of Volunteers for Cancer Studies

Too Few Cancer Patients Know About Ongoing Clinical Trials

By JOHN MCKENZIE

Aug. 1, 2006 — - When John Ray was diagnosed with lung cancer last year, he faced a difficult decision.

He had to choose between a standard chemotherapy drug or enroll in a clinical trial testing two other promising treatments.

"The standard treatment has had good success, and I just didn't want to risk not being able to have that," Ray said.

His situation is emblematic of a major issue in cancer treatment.

There are more than 400 cancer drugs now in clinical trials, many of which are experimental medicines with the potential to treat some of the most lethal and common forms of cancer.

The only problem is that researchers are running out of cancer patients to test all these new drugs on.

"Only about 3 percent of cancer patients participate in cancer clinical trials," said Dr. Robert Comis, a clinical trial expert and board president of the Coalition of Cancer Cooperative Groups.

Three percent is not nearly enough to test the expanding number of cancer drugs now in development, Comis said.

"There's no question that with the low level of participation, clinical trials take longer and the newer, more effective treatments take longer to become available to the overall public at large," he said.

For the cancer patient, waiting for that new drug may come too late.

"It may be the difference between surviving and not surviving," said Dr. Robert Pluenneke at the Kansas City Cancer Center.

So why aren't more patients enrolling in clinical trials?

"For some people, it's a matter of risk. Other people, it's a matter of convenience. Some trials require the person to return for additional testing," said Dr. Gary Hudes of the Fox Chase Cancer Center.

Surprisingly, the most common reason patients don't enroll is that they don't know they can.

The Coalition of Cancer Cooperative Groups did a recent survey and found that only 10 percent of cancer survivors knew of any clinical trial for their specific cancer.

So, increasingly, researchers are encouraging patients to do their homework on new drugs.

The National Cancer Institute's Web site, for example, has extensive lists of clinical trials sorted by the type of cancer and even the ZIP codes of the nearest trials.

"If there is a new treatment that works and if you don't take your chances, you can't win. But again, it still represents some element of risk," Hudes said.

Usually a small element, researchers said.

Studies show that cancer patients in clinical trials generally do as well or better than patients who do not enroll.

Copyright © 2006 ABC News Internet Ventures

http://abcnews.go.com/WNT/Health/story? ... 2&WNT=true

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Unfortunately, one of the reasons not mentioned in that report is that physicians who refer their patients to clinical trials "lose" that patient and the potential income from treating the person. This creates a subtle incentive on the MD's part to NOT inform people of clinical trials. I don't doubt that MDs want what is best for their patients, just that it's hard to keep clinical trials foremost in mind when they represent loss of income. Thus the recommendation in that article that individuals inform themselves rather than relying upon their providers.

Of course, here I am preaching to the converted, so to speak. It's the folks who lack the resources (computer access, education, etc.) to search for clinical trials online who are really done a great disservice. Such a shame. - Teresa

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Teresa,

Is it true though that hospitals that are NCI designated have to support clinical trials?

My mom went to a hospital that was seeking NCI designated status and she had no problem as far as not getting into trials or being offered trials.

Though she may have initiated the trial search. I am not sure.

Or was it because the main Dr was a surgeon and not a medical oncologist?

Just wondering.

John

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This May answer your question If i understand correctly Click On link to get info;

http://www.cancer.gov/cancertopics/fact ... cal-trials

And Neat Stats On trials And NCI Facilities;

http://www.cancer.gov/clinicaltrials/facts-and-figures

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The reason I haven't elected a Trial is because of the lack of information on the trials as to the efficacy of the experimental drugs in earlier Phases of the Trial Process or even the in vitro experimentation, coupled with Phase III Trials being double armed experiments with half getting the experimental and half not.

Frankly, going on a trial is like buying a pig in a poke. You can't see what you are getting.

I think if more aggressive approaches were taken in expediently delivering surgical (including new, innovative surgical remedies) and concurrent chemo and Radiation Treatment in the first line defense, as well as following the same protocol in the case of metastasic spread, then there would be more survival.

The tumor needs (initial primary and later lymph node spreads ) to be removed as quickly as possible by surgery, cyberknife and other means, followed by as much adjuvant chemo and radiation as possible. This has to be the case each time the cancer pops up until we get ahead of the cancer and stop its spread, or our bodies are too worn out to take it.

This is the protocol I want my team to follow. Hopefully, they won't equivocate down the road. But one key is to act fast with any new spread. So far they haven't. All that was offered by them was "Okay its Stage IV now. Terminal. All we can do is palliative treatment. Lets look for an experimental trial."

My answer was, "Pfft. I'm fighting. You with me or not?"

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At my initial meeting with the oncologist, I didn't know what end was up and had no idea anything about cancer even though it had claimed two brothers' lives.

I knew my cancer was advanced. I asked about trials. The doctor left the room briefly and said that a nurse was going to look up current trials to see if there was something there for me. He checked back and said there was one with thiladomide and something else. At the next appointment he said that he decided that the current therapy is the one that he recommended. I didn' ask him on what he based this decision, and I was too naive to ask any farther. In hind sight, I wish I would have been a study participant. I hear they are cared for more closely. I did NOT like this doctor or nurse or the way that I was treated for my lung cancer. I would never, ever go there again. Maybe if I were in a study, I would have had a different experience.

As it is, I am still alive so that's good, but, my lung/heart is fried, that's not good.

Just thinking outloud.

Anyone with study experiences to share? What's it like?

Cindi o'h

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NCI-designated centers are hospitals that specifically seek out this status to help them attract clinical trials and carry them out well. Because of the rigor required to approve a new therapy (and, in part, because of the desire to show that it works), clinical trial participants often do get closer scrutiny than others. Also, the hospitals offering clinical trials are often urban medical centers, where routine care is often closer to the "gold standard" than it is elsewhere. Sadly, the studies show that cancer providers do not adhere closely to their professional practice guidelines. There is a great deal of variability in the quality of cancer care (as there is in other conditions, no doubt), so choose your hospital and your provider carefully.

I recommend an urban cancer center, esp. an NCI-designated one, if you can get there, regardless of whether you qualify or wish to take part in a clinical trial.

Remember that early studies are not about establishing efficacy. They are designed to determine the safe dose and the incidence of side effects and adverse events. This is because determiing efficacy requires giving the drug to many more people, and it would be unsafe to do so before the safe dose and incidence of adverse events was known. The new drug's potential can be evaluated in a Phase II study on a small scale. Comparisons to standard treatment are done in Phase III trials.

From http://www.cancer.gov/clinicaltrials/le ... ical-trial

Phase I trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.

Phase II trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.

Phase III trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide.

No one with cancer should be randomized to no treatment; studies like this would not be approved by the human subjects review board (IRB). Every institution conducting research must have all research with human beings approved by such a board. If you are considering enrolling in a clinical trial, the consent form should give you a way to contact the IRB if you have questions.

- Teresa

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icbn,

You made a lot of good points. Fortunately there is a big push for more transparency with data from clinical trials.

I heard there is a push for results of the earlier phases to be more available. Of course, the drug comapanies are fighting this though

There are alot of things on pubmed and other sites that do show some of the results. Also if you look at the science behind the drug. Are there signal pathways that have actually been identified or genes or proteins that have been figured out or is just this drug works on this cancer so lets try it on this cancer?

My mom was offered a vaccine based on CEA and participated in the trial. I was a little concerned that as far as I know there was no testing to see if my mom had an elevated CEA or the cancer was checked for the antibody. I personally thought she should try another trial if there was not a check for CEA, but I think she may have been overwhelmed by everything.

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