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On the Edge - Page 1

Standard treatment wasn't going to help her cancer, so Sean Patrick turned to experimental therapy

By Sherry Baker

At almost every twist and turn of Sean Patrick's unique odyssey through the land of ovarian cancer, traveling the beaten path would have been a deadly decision. Instead, in a relentless search for answers, she found options where none initially seemed to exist and managed to beat the odds.

Sean Patrick, a business strategist and extreme sports enthusiast from Aspen, was 44 in the summer of 1995 when she sensed something was wrong. She felt inexplicably tired, almost as if she were being poisoned. "I live in a mountain resort community outside of Aspen and it wasn't unusual for me to go on a twenty-mile mountain bike ride," she says. "Then all of a sudden, if I worked out into the anaerobic range, I would have to go to bed for two weeks." But doctors didn't take her seriously, especially since they could find nothing objectively wrong. It was probably just stress, her doctor said—maybe she needed a hobby or a prescription for tranquilizers.

Yet Patrick noticed that her stomach was no longer flat. She awoke in the morning hours suffering severe indigestion. She was aware of ovarian cancer. Could that be the cause? As part of her search for an answer, she called her internist and insisted on a blood test for CA-125, a protein that is often found at elevated levels in ovarian cancer and some other conditions, including endometriosis and benign ovarian cysts. Patrick's doctor warned her that the test was hardly definitive, but went ahead anyway; her resulting measurement was a mere point above normal. A subsequent ultrasound showed some normal cysts, apparently in the process of resolution. That explained the discomfort, and the blood test, too, her doctor said.

The next year another ultrasound revealed new cysts and Patrick's CA-125 levels soared some 20 points. She continued to feel sick and in 1997 insisted on testing her CA-125 again. With the level still rising, Patrick badgered doctors to conduct exploratory surgery to see what might be wrong. "They didn't think it was warranted," she says, "so I had my lawyers draft an agreement that would protect them, and they finally agreed."

Malignant tumors were found in the peritoneal cavity and the small bowel, and her ovaries tested positive for cancer. Now Sean Patrick had a diagnosis: a rare form of ovarian cancer, micro-papillary serous carcinoma, stage IIIc.

Her oncologist told her that immediate chemotherapy was her only hope, but Patrick decided to take a couple of weeks to decide. She purchased a compilation of scientific literature, making a list of experts studying her type of cancer, which had re-cently been identified at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital by gynecologic pathologist Robert J. Kurman, M.D. Then she got on the phone, and Kurman himself agreed to review her slides.

For this kind of cancer, said Kurman, standard chemotherapy, the sort other doctors recommended, had little chance of helping at all. The reason was simple: The chemo, given every three weeks, worked by killing cancer cells as they divided. It could be given only so many times before a cancer became resistant and would not respond. Because normal ovarian cancer cells divided rapidly, the standard schedule of chemo was able to eliminate a significant portion of a tumor with each new dose. But because low-grade micropapillary serous carcinoma divides so slowly, only 18 percent of the original cells would be gone before the therapy had run its course; with the remaining cells resistant, the therapy would no longer be of use.

Outside the Box

Grasping the reality of her situation, Patrick promptly fired her oncologist and hired another doctor, Keith I. Block, M.D., with a reputation for thinking outside the box. Medical director of the Block Center for Integrated Care in Evanston, IL, Block has used what he calls "a multi-targeted approach" to fight cancer for more than 25 years. In addition to classic therapy, he also applies experimental and off-label drugs, nutritional pharmacology, and immune therapies. He relies on stress reduction and physical rehabilitation to help his patients withstand and recover from the debilitating treatments they will receive.

By the time Patrick arrived at Block's office in 1998, her CA-125 level had continued its upward march yet again. First he suggested that she enter a clinical trial run out of Nashville, based on an experimental therapy called UltraPheresis, which removes protective "shield" proteins surrounding tumors by filtering the blood. Once the proteins are gone, the immune system has more access to attack the tumor. UltraPheresis had devastating side effects: Critical blood factors and nutrients were removed along with the shield proteins, causing what Patrick describes as "flu symptoms magnified by a thousand times." There was nausea, vomiting, disabling body aches, extreme weakness, chills, and diarrhea. "I would shake so hard my teeth would knock and then have a fever so high I would sweat through my clothes." She and other trial participants nicknamed the side effects "shake and bake."

Realizing her cancer was estrogen-receptor-positive (stimulated by exposure to estrogen), Block also put her on the estrogen-blocker tamoxifen. Finally, he prescribed thalidomide, a drug once banned because it causes birth defects but more recently found to block a tumor's supply of blood, thus slowing its growth. The combination therapy, along with a program of nutrition, exercise and stress-reduction seemed to work. Patrick did well and her CA-125 levels remained in check.

Flight to Life

Then, in 2001, while Patrick was in training at Yosemite for a rock climb, she began to have stomach pain. She went to a nearby ER, but when doctors wanted to operate, she insisted on a transfer. But to where?

 

Patrick got on the phone and began hunting for options, eventually arranging to have herself airlifted on a "Flight to Life" jet to the Johns Hopkins Hospital in Baltimore. A scan traced the pain to massive intestinal blockages caused by tumor growth, and she was told she had four to six weeks to live. Meeting with gynecologic oncologist and surgeon Frederick J. "Rick" Montz, M.D., she pushed for answers. Montz, who was to die a year later from a heart attack, was known for his honesty and willingness to work with patients.

"He said my scans looked really bad, and growth was everywhere," Patrick recalls. Montz said he could put tubes in Patrick, and she could live out her allotted weeks like that. Or he could try to remove the tumor and resolve the obstruction, in which case the odds were that she would die during surgery itself. Patrick thought about it, and concluded she'd rather die under anesthesia than survive just weeks longer in a state she hardly considered living. "Let's go for it," she said. Montz agreed.

Patrick did almost die as a result of the surgery. But after hovering between life and death in intensive care, she pulled through. "If I hadn't taken the risk, if I hadn't had a doctor willing to take the risk with me," she says, "I wouldn't be here today."

Neither Patrick nor her doctors know why she's doing so well, but her disease remains stable. She takes Aromasin, an aromatase inhibitor, to suppress production of estrogen. And she also takes Celebrex, which may block key proteins essential to cancer cell replication. A recent scan shows Patrick's cancer hasn't grown in more than four years.

If Sean Patrick is any example, living with uncertainty about the future isn't the same as giving up hope. A slim chance doesn't equal no chance and, as Patrick states, "doing the homework" can often increase one's odds.

"I don't think you can blindly go along when you are diagnosed with a cancer beyond the early stage and just hope that treatment will cure you," Patrick sums up. "My life may depend in the future on keeping abreast of the latest developments now."