Deanna’s Discoveries: Clinical trials

You’re fighting cancer. So would you consider taking part in a clinical trial?

I’ve spoken to so many patients who are terrified of trials because of the unknowns of taking a drug that’s still being tested. I hope this edition of Deanna’s Discoveries addresses those fears.

I’m fighting my fourth cancer battle. The last time I had cancer I participated in two clinical trials.

In 2010, I participated in a trial that required that I take a trial drug in addition to standard chemo agents. It also required that I be poked, prodded, and biopsied a lot.

Dr. Jonathon Friedberg, Director of the Wilmot Cancer Center acknowledges clinical trials often require additional testing.

"There are IRBs that regulate these trials and ensure that we’re not poking and prodding people too much,” said Dr. Friedberg.

IRBs are institutional review boards that protect patients by reviewing the ethical and clinical implications of every clinical trial. So while I, as a patient, did have to undergo additional pokes and sticks, there was a great deal of reassurance that came with being tested so often. I had scientific proof that the drugs were working.

"Most patients who are on trials are followed closer than they would otherwise be, and in that sense, there’s an increased safety component to actually being on the trial," said Dr. Friedberg.

Following chemo, I had a double mastectomy. Then pathologists would evaluate what was left of the tumor. Pathologists would discover that a tiny cancerous center of the monstrous tumor remained. So after the mastectomy, I was given more chemo. This time I chose a randomized clinical trial which meant half of us got the tested drug and the other half did not. I was randomly chosen not to get the trial drug. But I still got the standard drugs — the same chemo agents I would have gotten had I not been in the trial.

"Almost all cancer trials do not include placebos,” said Dr. Friedberg. “We would never withhold treatment of a cancer from somebody in the context of a clinical trial."

But many patients have told me they fear being treated like a lab rat and are concerned that the clinical trial could cause more harm than good. That was the case in the infamous Tuskegee experiments. In these trials from 1932 to 1972, the government withheld treatment for Syphilis from black men in the study. Many suffered slow agonizing deaths. Penicillin could have cured the men, but they were never told. The tests finally ended in 1972 after journalists exposed them.

"The response to that event has been at a national level a great deal of regulation around clinical trials,” said Dr. Friedberg. "There are numerous layers at the federal level and at the institutional level to ensure that clinical trial conduct will not repeat those events."

And for the patient, there is so much to gain.

"Patients that I see in clinic wouldn’t be alive 20 years ago, and that’s all because of clinical trials,” said Dr. Friedberg.

In my case, I received cutting-edge treatment and survived to raise my then 8-year old son. Five years later we adopted two more children. But your participation can mean so much more. You could play a role in helping researchers develop better treatments for others.

"Patients often say ‘I want to do something. I want to fight this disease not only for myself, but I also want to make sure that other people don’t have to suffer this disease,’" said Dr. Friedberg.

That’s big. Knowing that my participation in a clinical trial could potentially improve treatment for my daughter and all our daughters is motivation enough.

I didn’t participate in a clinical trial this time because my oncologist and I didn’t immediately find one for which I was eligible.

If you’d like more information on clinical trials, the National Institutes of Health has a wealth of information, including a database where you can search for trials for which you may be eligible.