Chordoma Foundation

International leader in chordoma research and treatment seeks recipe for a cure

In Italian, the words for a medical prescription and a cooking recipe are the same: ricetta. So shortly after one of oncologist Dr. Silvia Stacchiotti’s first chordoma patients passed away, the man’s wife brought Dr. Stacchiotti a recipe book with some of his favorite dishes as a thank you and a way to memorialize the special bond that had grown between doctor and patient.

Spurred on by that touching gesture, and reminded of the man’s urging for her to continue to fight to find better treatments, Dr. Stacchiotti (pronounced “Stah-KEY-ah-TEE”) has become one of the foremost experts on chordoma care and leads multiple efforts to improve and standardize care for patients worldwide and to find new treatments for this rare cancer. At the Istituto Nazionale Tumori in Milan, Italy, she leads one of the most active sarcoma and chordoma practices in the world, caring for patients of all ages and nationalities who travel to Milan to avail themselves of her expert care and warm manner.

In addition to her clinical practice, Dr. Stacchiotti is engaged in a variety of clinical studies on very rare types of sarcoma, including chordoma, to identify drugs that could effectively treat these cancers. Her team has completed chordoma clinical trials using the drugs lapatinib and imatinib. Most recently, Dr. Stacchiotti has helped spearhead a multi-institution collaboration that includes Nerviano Medical Sciences, Dr. Adrienne Flanagan at University College London, and Dr. Hans Gelderblom at Leiden University, that is launching a trial to test afatinib, a drug that blocks a protein called EGFR, which drives chordoma cells to multiply uncontrollably. Preclinical research has shown that afatinib effectively stops growth of chordoma cell lines and mouse models. *The Chordoma Foundation is providing funding for the afatinib trial, which will start this fall, as well as assistance with outreach to the patient community. At the same time, Dr. Stacchiotti, is leading a group of over 40 physicians across Europe that is planning a multi-center study on management of primary localized sacral chordoma to compare surgical and radiation therapy approaches.

Dr. Stacchiotti has worked closely with the Chordoma Foundation since its inception. She serves on the Foundation’s Medical Advisory Board, has attended every research conference in the U.S. and Europe since 2007, and has been instrumental in expanding the Foundation’s efforts in Europe. She and the Chordoma Foundation’s European Liaison Hans Keulen, a patient who became a close friend, were instrumental in connecting and motivating the chordoma physician community in Europe, and even organized a meeting with the European Medicines Agency to help develop clarity about the regulatory requirements to get a drug approved for chordoma in Europe. Sadly, Hans passed away in 2015, leaving a void that Stacchiotti says will be hard to fill. But her work with Hans and the chordoma patient community has left her empassioned to put an end to this disease.

“I have worked with other patient advocacy groups, and I believe that the Chordoma Foundation is the best
advocacy group out there,” Stacchiotti says. “It is very well organized, and has a very smart way to support both patients and the research. When I started working with chordoma at the beginning of the 1990s, almost nothing was written in the literature. In the last 10 years especially, there has been much progress in both research and clinical care for this disease, and I really believe that most of these results have been achieved thanks to the support of the Chordoma Foundation.”

Dr. Stacchiotti has also been a driving force in convening and leading the team of medical experts that developed consensus guidelines for the treatment of chordoma patients. The first of these guidelines were published in the February 2015 issue of The Lancet Oncology, and a second edition focusing on recurrent disease will be submitted later this year. In partnership with the Chordoma Foundation, Dr. Stacchiotti organized these consensus meetings and helped bring key players to the table. Subsequently, she helped the Foundation turn these expert recommendations into an easy to understand guidebook for chordoma patients, and even helped translate it into Italian.

silvia_podium“With a rare cancer like chordoma, it is very important to have doctors who are willing to improve their knowledge and find a common language across medical specialties so they can work together. The initial meetings that led to the consensus guidelines were strong opportunities to get to know one another, and to start a discussion and start speaking the same language,” she notes.

“There is still a lot of work to be done, but the consensus meetings were a very important way to start getting the medical community on the same page. They have produced a document that can be used everywhere in the world, both for patients and doctors, to harmonize the medical approach to this disease that otherwise is treated in very different ways in many places.”

Dr. Stacchiotti’s original medical training was in the field of pediatrics, and she and her husband Alessandro, a surgeon, spent three years in Uganda doing medical aid work and some of the first clinical studies on HIV/AIDS. When civil war forced them to return to Italy, Dr. Stacchiotti entered a residency in oncology and gravitated to sarcoma, a category of cancer that includes chordoma. The couple have maintained a sarcoma practice together for several decades, giving them plenty to talk about at the dinner table. Some of that talk may have rubbed off at least one of their four children: their son is attending medical school now.

“I have worked with patients of all ages who have suffered with this rare disease, and the support they have shown for our efforts to improve treatment is very encouraging,” she says with appreciation. “Their kindness and passion makes us all want to do more to try to help.”

For Dr. Stacchiotti, the ultimate goal is to find and share that perfect ricetta: the recipe that will cure this rare cancer once and for all.

*More information about the Afatinib trial and guidelines for enrollment will be available soon.

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