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Posted on Fri, Apr 22, 2011 : 12:30 p.m.

Resources for facts and finding clinical trials

By Betsy de Parry

Dear Readers: If you missed last week, find out why clinical trials may be an option you're missing and why low enrollment is hampering progress.

For me, the decision to participate in a clinical trial was easy because it gave me an option that I wouldn't otherwise have had. And I needed every option I could get.

At the time, in 2002, chemotherapy was my only option, but at best, it would slow the disease — for how long was anybody's guess. Sooner or later, it would come back and require stronger, more toxic drugs. And then the whole cycle would repeat, except that remission periods would decrease with each subsequent treatment.

Clinical Trials.jpg

A clinical trial may increase your options.

Betsy de Parry


Eventually, I'd run out of options. The median time from diagnosis to death was eight years. That's why I jumped at the chance to participate in a clinical trial which could potentially lengthen remission periods and keep me alive longer.

The trial in which I enrolled used the same chemotherapy that I would have initially taken outside of the trial, but it added a vaccine six months later if I stayed in remission that long. I didn't. In fact, I only got through two of the six chemo treatments because chemo wasn't working. I bounced out of the trial.

The stronger chemo that immediately followed didn't work any better than the first. If anything was going to stop my stubborn disease, it would have to use a mechanism different than chemo to attack the cancer. Lucky for me, in the nick of time — literally — the FDA approved a new treatment that does.

On the day that it was administered, Alex and I watched it drip into my veins, knowing that it was our best chance to reclaim our future, and tears spilled down our cheeks as we thanked everyone who had made that chance possible — from doctors and scientists who developed it to everyone who supported their work.

And we were so grateful to the people who had participated in the trial which had led to FDA approval of the treatment. A delay, for lack of patient participation, would have cost me my life.

There are millions of people who, like me, owe our lives to patients who partnered with scientists and participated in trials. They are the very backbone of medical progress. But besides helping others, clinical trials may offer an option that you wouldn't otherwise have, one that could even potentially prolong your life.

The decision to participate in a trial requires careful consideration and understanding, and trials aren't for everyone. However, for those who are interested, there are many excellent resources for good information, starting with a discussion with your own physician.

Here in Ann Arbor, discussion about clinical trials is a common occurrence. It is, after all, one of the hottest hotbeds of research in the country, making information relatively easy to find and participation in trials miles above the national average.

But whether you live in Ann Arbor or not, the more we know about clinical trials, the more meaningful our discussion with our doctors can be.

Some great resources follow.

ABOUT CLINICAL TRIALS
An Introduction to Clinical Trials from U of M

13 short videos from U of M (I love these! They answer lots of questions in a short period of time!)

About Clinical Trials from The National Cancer Institute

FINDING A TRIAL
Find a trial at U of M

The National Institutes of Health maintains a searchable list of available trials, but it can be hard to navigate for those of us who are less than scientifically inclined.

The American Cancer Society has a free, confidential clinical trials matching service to help patients and health care providers locate trials that may be relevant to an individual's situation.

The Leukemia and Lymphoma Society has a trial locator for anyone who has a blood cancer (leukemia, lymphoma or myeloma).

INSURANCE COVERAGE
The American Cancer Society has a state by state guide to laws that cover clinical trials.

FINANCIAL ASSISTANCE FOR PATIENTS ON CLINICAL TRIALS
Lazarex Cancer Foundation


Next Friday, April 29: Family and Friends Are The Shining Stars That Light Our Way

Previous installments of Candid Cancer are archived here.

Betsy de Parry is the author of The Roller Coaster Chronicles, a book about her experience with cancer and the shorter, serialized version she wrote for annarbor.com. Find her on Facebook or email her.