By Mary Ellen Shepard, PhD

You have cancer were the worst three words that Arthur Foster‚ 65‚ had ever heard. Foster‚ of Harbor Springs‚ Michigan‚ was diagnosed with lung cancer in January 2000 and underwent the removal of two lobes of his right lung and three ribs. But the cancer came back in September 2000. With a prognosis of three to six months to live‚ Foster says‚ “I didn’t want to lie in bed and die. I wanted to find a clinical trial.”

Clinical trials provide the proof that a new treatment is better than the one being offered. They can offer a source of hope for cancer patients who have nowhere else to turn or those seeking potentially more beneficial or less toxic therapies. While most doctors offer the option of a clinical trial to patients‚ some do not. Finding a clinical trial can be a difficult task.

Resources for Clinical Trials
Cancer care can be found within driving distance for most Americans. Many oncology practices are involved in clinical trials‚ which might be based in one region but enroll patients in that trial from across the country through local oncology practices. In other words‚ a clinical trial sponsored by the National Cancer Institute (NCI) in Washington‚ D.C.‚ could enroll patients from across the country if their local cancer treatment center chooses to take part. National organizations that sponsor or conduct clinical trials across the country include federal agencies‚ cooperative groups‚ cancer centers‚ and the pharmaceutical industry.

Travel is often a limiting factor for cancer patients‚ who may choose to stay close to the support of family and friends. For this reason‚ a search for a clinical trial should always begin at home with your own oncologist‚ who should not only be able to tell you if something is available locally‚ but also give you resources to see what may be available in other parts of the country.

The NCI and the American Cancer Society (ACS‚ 800-ACS-2345 or www.cancer.org) can put a patient in touch with local centers conducting trials. “Consider contacting cancer centers within your state or city‚” suggests Clinical Trials Specialist Andrea Denicoff‚ RN‚ at the NCI in Bethesda‚ Maryland.
Depending on the type of cancer and where you live‚ you may have many options‚ some of which might involve travel. Local wellness centers can also offer assistance. Eileen Coan‚ MA‚ MLS‚ medical librarian at The Gathering Place (216-595-9546; coan@touchedbycancer.org) in Beachwood‚ Ohio‚ is “happy to assist anyone in finding a clinical trial.”

The earlier a drug is in the clinical trial process‚ the fewer places it is available. This means those facing recurrent disease and who are not responding to the prescribed regimen might find only a few institutions where a new approach to their disease is in clinical trial.

“Clinical trials have so many requirements‚ they almost require the patient to live far away for long periods of time. The inconvenience is extremely difficult‚ and it is difficult to weigh the benefits for therapeutics that are unproven‚” says Eric Rowinsky‚ MD‚ Director of Clinical Research at the Institute for Drug Development‚ Professor of Medicine in Oncology‚ The University of Texas Health Science Center‚ San Antonio‚ Texas. However‚ some patients are willing to travel.

“I enrolled in a trial and drove about 1‚000 miles every three weeks to participate‚” Foster explains. Foster enrolled in a trial at The Arthur G. James Cancer Hospital in Columbus‚ Ohio‚ which was testing the use of the drug suramin in combination with Taxol® (paclitaxel) and Paraplatin® (carboplatin) in non—small-cell lung cancer.

Most of the government-sponsored cancer clinical trials are conducted through the NCI. “A patient considering a cancer clinical trial can start by contacting the NCI’s Cancer Information Service (CIS) at 800-4-CANCER or through the NCI’s website‚ www.cancer.gov‚” states Denicoff. There are 41 NCI-designated comprehensive cancer centers throughout the United States. A list‚ including contact information‚ is available at www.nci.nih.gov/cancercenters or by calling the CIS.

The NCI’s Physicianœs Data Query (PDQ) is one of the most comprehensive databases of cancer trials available on the internet at www.cancer.gov/search/clinical_trials. This website provides access to more than 1‚800 open trials. Also‚ CIS representatives will do a customized search of the PDQ based on an individual patientœs needs.

“The internet is the best source of clinical trials information‚” says medical librarian Coan. Many websites contain databases of active clinical trials. No single resource‚ however‚ lists every cancer trial‚ and those sponsored directly by pharmaceutical companies are not listed in voluntary databases.

Contacting the pharmaceutical companies directly is often the best source of information on trials they may be conducting. Also‚ check individual cancer center websites for industry-sponsored trials.

Common Ground
Other cancer patients are often a valuable source of information. Contact local support groups through your hospital‚ physician‚ or ACS. Cancer centers and cancer websites often have chat rooms or email lists where patients can contact each other. Patients who are already enrolled in a trial are often willing to discuss their experiences with others.

However‚ Dr. Rowinsky cautions‚ “Patients often make recommendations based on their disease and experiences‚ which may represent misinformation to a patient who is making a decision.”

Before You Begin
Fully understand both the risks and benefits of each trial you are considering. Each trial has its own eligibility criteria and often has restrictions based on the type and stage of cancer‚ age‚ previous treatments received‚ and current health status. Discuss them with your doctor and/or contact the study coordinators conducting the studies you are considering. It is helpful to determine whether the trial is phase I‚ II‚ or III since each one has its advantages and disadvantages.

“Don’t be afraid to ask questions. I made lists of questions and took a tape recorder with me to my visits‚” suggests Barbara Sharpe‚ 56‚ who enrolled in trial HMC 1197 within the Blood and Marrow Transplant Program at the Ireland Cancer Center of University Hospitals in Cleveland‚ Ohio‚ after being diagnosed with stage IV breast cancer three years ago. She received a blood stem cell transplant.

“I was terrified the first day I had chemotherapy‚ but it didn’t hurt. Two to three days later‚ though‚ I was really sick from the side effects. I was not a great candidate for chemotherapy; I got sick a lot and really tired. The newer meds for nausea helped a lot‚” she recalls.

Some patients tolerate treatments well‚ however. “I never got sick. I did sleep a lot‚ but I never missed a day of work except to get treatments‚” Foster says. Foster would typically drive to Columbus on a Thursday‚ have blood work drawn on Friday‚ receive treatments on Monday‚ drive home on Tuesday‚ and be back at work on Wednesday. “I still get numbness in my fingers and toes but my hair is back and I feel great‚” he says.

Cost can be another consideration. A patient is often responsible for travel‚ lodging‚ or medical expenses not covered by insurance. Recently a law was passed that requires Medicare to cover routine costs associated with a clinical trial. Even if you don’t have medical insurance‚ help may be available. Sharpe had no assets or medical insurance when she enrolled in the trial. “The social workers in the Department of Human Services were wonderful. They managed my case and Medicaid covered the expenses‚” Sharpe recalls. Information on financial assistance is provided by CIS at cis.nci.nih.gov/fact/8_3.htm.

While clinical trials do not guarantee a benefit above standard therapy‚ sometimes patients do benefit from the treatments.

“Patients who have participated in clinical trials often feel they receive top-notch care whether they are in the standard therapy or experimental treatment arm. The physicians tend to be leaders in their field and have a dedicated research team‚” says Denicoff.

Foster agrees‚ “The doctors and nurses don’t come any better. They treated me like I was their dad‚ and they didnœt want to see me die.” Foster also gratefully acknowledges‚ “I would not be here today if I had not participated in a clinical trial. I would tell anybody in the world to go do it."