Collaborating for a moonshot on cancer

By Suzie Siegel

What can patients do to help the new federal “moonshot” cure cancers? “Demand collaboration from the scientific community,” Vice President Joe Biden, in charge of the project, said last week.

I’m happy to report that collaboration was evident at international meetings on sarcoma last fall in Salt Lake City. What stood out to me was synergy, whether it was drug combinations or people working together to be more effective.

The Connective Tissue Oncology Society (CTOS) celebrated its 20th anniversary with 750 doctors, scientists, students, advocates and other health-care professionals from around the world – more than expected.

The Sarcoma Alliance for Research through Collaboration (SARC) held its biannual meeting in conjunction with CTOS, as usual. For the first time, the American Association for Cancer Research (AACR) put on a conference on the “Basic Science of Sarcomas,” and nurses from the Oslo University Hospital in Norway had a symposium for their colleagues.

Dr. Jonathan Fletcher

The AACR conference grew out of a group of about 35 doctors, mostly men, who began meeting privately before CTOS to discuss cutting-edge sarcoma science, said Jonathan Fletcher, MD, of Brigham and Women’s Hospital in Boston. As the years passed, they wanted to open the meeting to others, especially younger doctors. This fall’s conference attracted 228 people, more than expected.

"We're thrilled to see this expansion," said Dr. Fletcher, one of the conference organizers. Everyone with whom I spoke raved about the conference.

Dr. Herman Suit

The CTOS meeting began by honoring Herman Suit, MD, its founding father. In the early 1950s, he said, each discipline was for itself and waged verbal combat. At England’s Oxford University, he was delighted to find it multidisciplinary and collaborative.

That is now the norm, except for a few people who have this “big Y chromosome problem,” said Dr. Suit, a professor emeritus of radiation oncology at Harvard Medical School in Cambridge, Mass.

In 1993, a patient funded a meeting of sarcoma oncologists. Afterward, Dr. Suit suggested the doctors meet regularly. They thought of merging with the Musculoskeletal Tumor Society, but its members had to be surgeons.  In 1995, they founded CTOS.

In my next post, I’ll highlight the AACR presentations.

Annual meeting of world sarcoma society

By Suzie Siegel

New research on sarcoma will draw hundreds of doctors and scientists from around the world to a conference in Salt Lake City next month.

The international Connective Tissue Oncology Society (CTOS) will celebrate its 20th anniversary Nov. 4-7 at its annual meeting. Executive Director Barbara Rapp expects 600-700 people will attend.

Dr. Lor Randall

“Treatment has evolved from trying to control the spread of sarcoma through surgery and radiation to standard chemotherapy to targeting the biology of different types of sarcoma as well as helping the natural biology of the individual patient,” said Dr. R. Lor Randall, director of sarcoma services at the Huntsman Cancer Institute in Salt Lake City. He is a former CTOS president and its current program cochair.

“We are looking at which patients face the greatest risk of developing sarcomas and having the sarcoma spread. We are trying to detect this spread microscopically before tumors become visible via searching for tumor DNA in the blood,” he said. “We also will examine the specific challenges facing adolescents and young adults with sarcomas.”

CTOS has dubbed 2015 the Year of Angiosarcoma and Hemangioendothelioma, two related vascular sarcomas. Angiosarcoma survivor Corrie Painter, cofounder of Angiosarcoma Awareness, said: "I'm excited about the progress we're making in this aggressive cancer."

A scientist who has studied biochemistry and cancer immunology, Painter is associate director of operations at the Broad Institute in Cambridge, Mass. Each year, about 300 people are diagnosed with angiosarcoma, she said, and almost a third of them will die within five years.

For the first time, the American Association for Cancer Research (AACR) will hold a special conference on the “Basic Science of Sarcomas” Nov. 3-4, in conjunction with the CTOS. Participants will discuss recent advances in genomics using new sarcoma models, immunotherapy, metabolism and signaling pathways.

Once again, the Sarcoma Alliance has planned a dinner for patient advocates Nov. 4. "It's a great forum for advocates to talk to one another in person and discuss ways we can work together," said Executive Director Alison Olig, a rhabdomyosarcoma survivor.

The next day, the Sarcoma Alliance for Research through Collaboration (SARC) will discuss its tissue bank, portal for genomic data and progress in its clinical trials. Another first will be a symposium Nov. 6 to strengthen international cooperation among sarcoma nurses, arranged by a group from Oslo University Hospital in Norway.

On Twitter, you can follow the news by searching for the hashtags #CTOS2015 and #AACRsar15.

NEWS: Michigan plans Adult Sarcoma Survivorship Program

By Suzie Siegel

The University of Michigan Comprehensive Cancer Center in Ann Arbor is fine-tuning an Adult Sarcoma Survivorship Program to deal with severe and life-threatening illnesses that arise at least two years after surgery, radiation and chemotherapy have been completed.

Dr. Larry Baker

“Survivorship care is an emerging priority in cancer care,” says Professor Laurence Baker, DO, a renowned sarcoma medical oncologist. He says the interdisciplinary program will be the first of its kind in the United States.

Sarcoma treatment can increase the risk of illnesses such as high-blood pressure, heart disease, type 2 diabetes and kidney failure later in life. It’s a hollow victory if physicians help cure the sarcoma only to have a young patient die of a heart attack a few years later, Dr. Baker said.

His program will be open to survivors between ages 18 and 50. For some, it will serve as a transition from pediatric to adult care.

At this time, it will not treat issues that are not life-threatening, such as infertility or psycho-social difficulties.

Patients will meet first with a sarcoma medical oncologist and get a comprehensive exam. The program will monitor their health, working closely with their primary care physician, other referring doctors and specialists, Dr. Baker said.

The program also will contribute to research into survivorship issues. Prospective patients can call 1-800-865-1125 for more information.

Dr. Baker spoke last month at a dinner for patient advocates organized by our executive director, Arthur Beckert. He said the Sarcoma Alliance recognizes the importance of survivorship issues and plans to expand its information on the subject next year.

The dinner kicked off the annual meeting of the Connective Tissue Oncology Society in New York.

This post is part of a series on CTOS.

To learn more about Sarcoma Alliance or donate to our mission of supporting those affected by sarcoma, please visit our website.

NEWS: Meeting Details Latest Sarcoma Research

Doctors examine studies on posters at CTOS.

By Suzie Siegel

The New York City marathon of sarcoma research ended this month, and we will have a series of reports on it.

The annual meeting of the Connective Tissue Oncology Society drew 815 people, making it the largest gathering of sarcoma physicians and scientists that the world has ever seen.

No reporters showed up, even though I sent out PR and begged everyone I know in the area. (I was a newspaper reporter and editor for 18 years before being diagnosed with leiomyosarcoma.) This illustrates the importance of patient advocacy in getting the word out about trends, ideas and research not yet published.

Michael Leahy, MD, a medical oncologist for the Greater Manchester and Oswestry Sarcoma Service at The Christie in England, tweeted the photo above. We were among a handful of people tweeting from the conference.

Dr. William Tap

This was my seventh CTOS meeting. When I lamented my inability to understand some presentations, William Tap, MD, said he didn’t understand everything either. That’s really saying something since he’s the section chief for sarcoma oncology at Memorial Sloan-Kettering Cancer Center in New York. But the inscrutability was a good sign, he said. It indicated that the meeting was more multidisciplinary, with more on biochemistry and genetics.

As scientists and physicians search for more targeted treatments, they continue to revise subtypes.

Dr. Picci

For example, Piero Picci, MD, director of the Experimental Oncology Laboratory at the Istituto Ortopedico Rizzoli in Bologna, discussed a retrospective study of spindle-cell sarcomas of the bone. Of the 400+ cases, more than 100 had to be thrown out because they would be categorized differently today.

When cases were reclassified, the study indicated that patients whose leiomyosarcoma started in the bone did worse than those in other categories. Chemotherapy given before surgery seemed to help more than chemo afterward, Dr. Picci said.

He also suggested that synovial sarcoma be reclassified because it doesn’t arise from synovial tissue.

Dr. Jon Trent

"He presented not only a reclassification of spindle-cell sarcoma of bone, but he also presented which patients benefited from chemotherapy and which types were less likely to benefit. There was a lot of data that will help us manage patients," said Jonathan Trent, MD, PhD, who directs the Sarcoma Medical Research Program and co-directs the Musculoskeletal Center at Sylvester Comprehensive Cancer Center in Miami. "To me, it was the highlight of CTOS."

Sosipatros Boikos, MD, medical director of the National Institutes of Health's Pediatric/Wildtype GIST Clinic, presented a multi-institution study of gastrointestinal stromal tumors without KIT or PDGFRA mutations.

The study found the tumors could be divided into three groups. Two resembled the traditional, adult GIST. The other one was different and SDH deficient. Dr. Boikos now refers to wildtype GIST as SDH-deficient GIST, and the audience seemed to agree with the new term.

‪A study by the Royal Marsden Hospital in London found that the spread of solitary fibrous tumors (SFT) is more predictable than thought. Angelo Paolo Dei Tos, MD, director of oncology and anatomic pathology at the General Hospital of Treviso, Italy, suggested that physicians no longer use the term “benign SFT” because it can metastasize, although at a lower rate than “malignant SFT.”

For more information, see my previous post on reclassifying sarcomas.CTOS has summaries of papers and posters at: http://ctos.org/2013%20CTOS%20AM%20FP%20Complete%20LRRev1030-Large.pdf Searching by your subtype is an easy way to plow through the information, but keep in mind that some summaries don't mention particular subtypes.

Suzie Siegel is a former journalist and longtime Sarcoma Alliance volunteer. The views represented here do not necessarily reflect those of Sarcoma Alliance and nothing here should be taken as medical advice.