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Clinical Trial Patients Spread the Word: Hope

Dick Shaffer is forever grateful for the doctors and nurses who

successfully treated his cancer in a clinical trial two years ago.

He never would have met them, however, without the person who

suggested he consider an experimental study.

For that reason, Shaffer has vowed to do everything he can to

encourage other cancer patients to consider enrolling in clinical

trials. He started by joining the Bristol-Myers Squibb Tour of Hope™

team of 24 cyclists who this month completed a 3,300-mile, cross-

country bicycle ride aimed at boosting low clinical trial

participation nationwide. The tour, led by cancer survivor and seven-

time Tour de France winner Lance Armstrong, began in San Diego on

Sept. 29 and ended in Washington D.C., on Oct. 8, Shaffer's 59th

birthday.

Riders in four teams of six made the journey by taking turns cycling

about 100 miles a day (four or five hours). At the end of a team's

shift, the cyclists were transported to food and lodging and then

taken to the next starting point to catch up with their teammates.

The trip was challenging and extremely rewarding, says Shaffer, a

retired utility company finance director from upstate New York who

has competed in triathlons since 1984. Just a few years before the

tour, he was diagnosed with stage 3 esophageal cancer and given the

prognosis of a 20% chance of survival – at best.

" This is a celebration for me, " Shaffer says. " It's a chance to

say, `in your face, cancer,' and a chance to tell people there is

hope. People need to know that cancer is not always a death

sentence, and we need clinical trials because they are the only way

to beat cancer in the long run. "

Clinical trial message sent best: patient to patient

Shaffer knew nothing about clinical trials in 2003 when his doctor

found a 5-centimeter tumor at the intersection of his esophagus and

stomach.

The mass was discovered during a routine physical before Shaffer was

to compete in his second Ironman triathlon. He signed up for the

competition at the suggestion of his nephew, Mike Siegel, 45, the

same person who encouraged him to start training for triathlons 20

years before.

During the physical, Shaffer happened to mention to the doctor that

he was having trouble swallowing vitamins. The doctor then ordered

an endoscopy and discovered the tumor. Shaffer visited several

doctors after that, receiving one poor prognosis after another.

Then Siegel suggested he try a clinical trial. It had worked for him.

Siegel was diagnosed with chronic myelogenous leukemia (CML) in

April 1995 and given a 50% chance of survival with standard cancer

treatments. Looking for better odds, the then father of three (with

twins on the way) sought experimental treatments, therapies only

available in clinical trials. Two studies have kept him alive since

then, he says. The second trial involved the drug now called

Gleevec®, which he continues to take today.

" I watched the twins being born and growing up, and they're now 10 –

and an earful, " says Siegel, who was treated at M. D. . " So

I tell patients, `Clinical trials saved my life – twice. Don't be

afraid. Ask about a clinical trial.' "

Taking the leap of faith in a clinical trial pays off

At first, Shaffer resisted that suggestion. He didn't know anything

about clinical trials and was afraid. But then he thought about the

people who needed him most, his wife and two young sons, then 8 and

13. He searched for a trial that might lead to a better possibility

of survival, and found one at M. D. .

Entering the study, however, meant moving to Houston for six months

and leaving his family behind so his sons could remain in

school. " They wanted me home. I'll never forget the day I said

goodbye at the airport, " Shaffer says. " It was hard. "

Shaffer's wife, , took care of the kids in New York, and

Shaffer left for Houston. Fortunately, his sister and brother-in-law

moved with him to become his caregivers.

His treatment was aggressive: 12 weeks of chemotherapy (involving a

combination of three drugs), 12 weeks of chemotherapy and radiation

and, finally, surgery to remove half of his stomach and half of his

esophagus.

The medication made him very sick, but he was upbeat during his

twice-daily phone calls with his sons. Shaffer even managed to bike

during the period he received chemotherapy and radiation. He kept

such a positive attitude throughout his treatment that patients and

doctors said he made them feel better. " I was so determined to beat

this thing, I think, " he says.

Patient's struggle and journey of hope comes full circle

And that he did. After treatment he reunited with his family, built

up his strength and even competed with his wife in the Houston

marathon. Next thing he knew he was taking another cue from his

nephew, a 2004 cyclist in the Tour of Hope, by becoming a tour

member himself.

Siegel joined Shaffer, Armstrong and the rest of the 2005 Tour of

Hope team as they rode through the Texas Medical Center for an Oct.

3 stop at M. D. . Events there included a rally, press

conference and a panel discussion about clinical trials.

Siegel was near the rally podium where, as one of the speakers,

Shaffer was able to live out his dream of thanking every member of

the medical team who helped eliminate his cancer.

His emotional thank-you touched the crowd made up of the public and

hundreds of yellow-clad cancer center employees. Shaffer's former

nurses cheered the loudest, holding huge campaign-like signs bearing

his photo. Armstrong joked that Shaffer might threaten Houston Mayor

Bill White's re-election bid.

Shaffer just hoped his experience might lead other cancer patients

to new treatments that might free them of cancer.