Why I Don’t Mind Being a Human Science Experiment for Cancer Research

By ABC News

Mar 6, 2014 5:25am

By Emily Helck

While a wintry mix was making life generally slippery a couple of days ago, I was on my way from New Jersey to a hospital in northwest Washington, D.C. A few tubes of blood were drawn. A pregnancy test was administered. Then I was injected twice in my thigh with a mystery solution, and sent on my way, with a check-up scheduled two days later.

I’m in a clinical trial.

A few months ago, I finished my breast cancer treatment trifecta (chemo, radiation and a drug called Herceptin). This trial, which is looking at a couple of possibilities for vaccines to prevent cancer from recurring, is in addition to the standard treatment I have already received.

It’s been pretty painless so far. It’s not so bad feeling like a science experiment when it’s by choice. And it’s even fun to feel like I could be involved in something potentially historic. That’s why I was surprised when a recent article stated that a significant number of clinical trials for cancer patients are canceled due to low enrollment.

But then again, reactions to my own participation have been mixed. When I tell people about it, the conversation often goes something like this:

“So are they paying you?”

No.

“But they’re covering your trips down there, right?”

No again.

“But you’re definitely getting the drug, right?”

Nyet.

I explain that the study is randomized, and that I have no way of knowing if I’m getting the real stuff or a placebo. Then they look at me funny. Why exactly would I do this? Why would I go through a considerable inconvenience, cost, stress, just to maybe get a drug that maybe will help me?

Well, because science. It’s how it works. I’ve benefitted from other women before me who did similar things. I (and many others) am alive today not just because of researchers and practitioners, and drug companies and surgeons, but because of regular people. Regular people who said, “Try this on me.”

I have a friend whose mom was part of a Tamoxifen study. She seems like a celebrity to me. (Cancer-related claims to fame are kind of limited, I guess). The determined women who participated in the Herceptin trials in the 1990′s are legendary, their stories lovingly plastered across Internet message boards.

They, and the women who tested dozens or hundreds more drugs, are my saints. They are the ones who walked before me, when things were uncertain, with faith enough in the scientific method to take on concoctions made of things like crushed up tree bark. (Bark from the Pacific yew tree is the basis for the widely used chemotherapy drug taxol.)

Of course I also wanted in on this trial because it does look promising. Of course I hope that I am getting the real thing, and that it works. But I also signed up because I find research and scientific advancement exciting. (This is coming from someone who read several novels about infectious diseases as a 12-year-old.)

All trials are not created equal. There are studies for surgical techniques, chemo, immune therapies — the list could go on for days. The site clinicaltrials.gov lists nearly 6,000 trials for breast cancer treatments alone. My experience has gone smoothly so far. That said, the treatments are, of course, still a wild card.

Before sun-up today, I headed back to the hospital via the D.C. bus system. After getting lost a handful of times, I made it in for my check-up. The always-warm and efficient nurse examined the injection sites. They were little red welts, perfectly lined up. Bites from a very precise mosquito.

To record their size, the nurse drew a little starburst shape on my leg. It looks like the medical equivalent of a squealed “Yay!”

Under an hour later, I was on the Amtrak back to New Jersey. The train cars were split, with the seats in each half of the car facing in opposite directions — some forwards, some back. I chose, obviously perhaps, one that was looking forward.

Emily Helck is a 29-year-old artist from Jersey City, N.J. When she began chemotherapy in September 2012, she started her blog, “Real Tumors of New Jersey.”  She posted a video containing a year of self portraits to her blog on Sept. 29, which has since gone viral.

“A Day in the Life” is a series of blogs written by people who are living with medical conditions.

 

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