In November 2000, just after her 16th wedding anniversary with husband, Michael, Elsie Hernandez’s CT scan showed a mass that appeared to be pancreatic cancer; immediate surgery was needed. Elsie, a mathematician, told her students at the Technological Institute in Costa Rica that she had to leave, accepted her colleagues’ well-wishes and scheduled her tumor removal. A week later she had a diagnosis: GIST.
It is at this point that David, Michael’s brother and research biochemist at the University of Guelph in Ontario, stepped in to contribute whatever help he could.
The journey of Elsie, Michael and David from this point on is somewhat incredible in the telling; a story of luck and perseverance that paved the way for David to take on the struggles of Canadian GIST patients.
“The first serious phone call I made after I found out about the diagnosis was to an oncologist friend in Canada. He told me to find out if it was c-KIT positive because he had just found out about this new drug called STI-571,” said David.
“It felt like it was out of a novel, but the initial announcement of Gleevec for GIST was such a breaking news story that most doctors took notice of it.” Elsie was indeed c-KIT positive, so David and Michael began researching through the internet, operating under the assumption that most doctors did not know about this new treatment for GIST. Michael eventually found the Life Raft Group where Executive Director, Norman Scherzer suggested they see Dr. Mary Louise Keohan, who luckily had a few slots open in the trial at Columbia Presbyterian Hospital in New York City. Elsie got on a plane to New York.
Within days of landing, Elsie was randomized into the trial and began taking 800 mg of Gleevec. “It was just incredible, it was all so fast.” Just like out of a novel, Elsie was diagnosed and receiving treatment within a few months.
Elsie receives twice yearly scans and has been stable for over seven years.
But the story does not end here for David.
“It was the beginning of something big with the Life Raft Group,” he says.
One of the first people David met with GIST was Sheila Murphy. “I realized there are other people out there with this disease.”
David donated his time on many science-related materials for the LRG and also began holding meetings for GISTers in Canada. Along with Sheila, and new friends, Lee Cousins and Linda Hampson, the group met occasionally for two years, offering support and advice. They dreamed of doing more with the group, an organization of their own to tackle issues affecting Canadians.
In June of 2006, Sheila lost her battle with GIST. Six months later, in December, Lee passed. David began to question the feasibility of their aspirations with the loss of his friends. However, knowing that this group would help more GIST patients down the road, he forged on.
“GIST Sarcoma Life Raft Group Canada” (as it is to be called) has since applied to be incorporated in order to receive tax-deductible status and David has formed a Board of Directors and bylaws. Non-profit status can take up to a year to be granted, but David has not been deterred and is concentrating on the future.
“For at least the first year we will be focused only on Canada-specific problems facing patients.”
His experiences with GIST have taught him one thing that he can share with others. “Make contacts and find out as much as you can. Many doctors know more now so there is little incentive for patients to go out and find out more information. Educate yourself, it’s still really important and by no means routine. If you are not paying attention, you’re not going to know.”