An estimated 12,000 to 15,000 Americans are diagnosed with sarcomas each year. Of those, only about 3,000 to 4,000 are leiomysarcomas.
"Erica has a particularly unusual subtype -- at most only 5 to 20 a year," said Demetri. "It looks like it acts differently than other sarcomas and we worry that its behavior is more aggressive."
Though there are many clinical trials for sarcomas and LMS, there are few for her subtype myxoid, which means "mucus."
After his wife's diagnosis, Rick Kaitz consulted with three top medical institutions -- Dana-Farber, New York's Memorial Sloane Kettering and Duke University in North Carolina -- and each offered different opinions on how to best treat the disease. None could promise a good outcome.
"One thing we learned, and this is not the case with all rare cancers, it's really kind of trial and error," said Rick Kaitz. "It's like going to Vegas and playing craps. You see if something works and then you try something else. You really don't know what is driving [the cancer] and what works and what doesn't work."
Erica Kaitz underwent a second surgery at Brigham and Women's Hospital in Boston, but a month later, there was explosive tumor growth in her abdominal and pelvis. Doctors at Dana-Farber began chemotherapy with IV treatment, once every three weeks.
"Things slowed down," said her husband, but after seven cycles over 21 weeks, "it stopped working."
For the last 10 months, doctors have tried a variety of drug therapies.
"In the most successful type of targeted therapy [in other sarcomas], we have identified the mutation and the short circuit and the cell that shuts off the short circuit," said lead researcher Demetri. "In Erica's type, nobody knows where the short circuit is or what they are. The challenge to develop an elegant targeted therapy is basically impossible."
He said Kaitz's funding may help scientists understand more about this class of tumors and help a larger group of patients down the road, but may not provide any benefit for Erica.
"What does it take to be game-changing?" asked Demetri, who will also ride in the PMC race. "It's important to manage public and private expectations. We are incredibly grateful for the support of orphan research. It's hard to get research funding even for the common diseases and for the rare ones, almost impossible."
But with such a complex challenge, even "a billion dollars" may not yield immediate answers. "But, as I tell Rick and Erica," he said, "you never know when we are going to trip over the next discovery."
Today, Erica Kaitz is "hanging in there," according to her husband, who does all the cooking, shopping and organizing of her multiple medications.
"It's been a total role reversal," he said.
She suffers side effects from therapy and Kaitz worries about cardiac damage with the latest drug. "For her, it gets a little old and tiring," he said. "She has no hair and fatigue and it's hard making the bowels work."
"She appreciates everything I am doing but I don't think she particularly likes being the patient," he said. "We don't spend a lot of time talking about regression and we try to enjoy the good days, and there are a fair number. But many days are not so good."
Rick Kaitz said he feels as if he has become a "research scientist" as he desperately works against the clock to raise funds to save his wife. He also knows that in the $35 billion war on cancer, his foundation's $1.5 million contribution is "peanuts."
"But it's peanuts that will be driving the largest LMS research initiative ever taken," said Kaitz. "It's exciting, but it's also pretty pathetic. …I am not poo-pooing breast cancer or prostate cancer -- no one wants to get any cancer, but you are better off with one of those rather than one that is not understood."
Editor's note: A previous version of this story indicated Rick Kaitz quit his job to find a cure for his wife's cancer. In fact, he has cut back his work to 30 percent of his time.