The Leiomyosarcoma Research Roundtable 2019

The Leiomyosarcoma research Roundtable On September 14, 2019, 35 sarcoma experts and researchers assembled at the Sylvester Cancer Center in Miami, Florida, to discuss the current status of treatment and care in leiomyosarcomas (LMS) as well as brainstorm about possible ways to approach LMS in the future. The roundtable was initiated by the US patient…

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Update on the management of sporadic desmoid-type fibromatosis

Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a position paper giving recommendations on the treatment of Desmoids. Here, we…

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Now published in the EJC: The Management of Desmoid Tumors Guideline

  https://www.ejcancer.com/article/S0959-8049(19)30832-9/fulltext This paper provides an evidence-based, joint global consensus guideline approach to the management of this disease focusing on: molecular genetics, indications for an active treatment, and available systemic therapeutic options. This paper follows a one-day consensus meeting held in Milan, Italy, in June 2018 under the auspices of the European Reference Network for…

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Update on the management of sporadic desmoid-type fibromatosis

Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a pdf position paper giving recommendations on the treatment of Desmoids (1.59…

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Fostering Age Inclusive Research: The Accelerate Working Group

  SPAEN supports the Accelerate Working Group       Research into teenage and young adult cancers has made slower progress than for any other age group. One reason is that many clinical trials exclude patients under eighteen on the basis of age alone, with no other justification. Many of these cancers are sarcomas. SPAEN…

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SPAEN Annual Conference Report 2016 (2)

  In September 2016, the community of patient advocates for sarcomas, GIST and desmoids came together for another successful SPAEN Annual Conference, with Poland being a warm and welcoming host country. We’d like to take the opportunity to thank all those who contributed: our committed patient advocates and experts and our partners from the industry. The…

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FDA approval for Ripretinib in fourth-line GIST

The company Deciphera Pharmaceuticals announced on May 15 that the U.S. FDA has approved Ripretinib (brandname Quinlock™) for the treatment of adult patients with advanced Gastrointestinal Stromal Tumor (GIST) who have received prior treatment with 3 or more kinase inhibitors, including Imatinib. “Today’s approval of Ripretinib establishes a new standard of care for patients who…

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Results of 62005 study available now

            The 62005 study looked at the ten-year progression-free and overall survival in patients with unresectable or metastatic gastrointestinal stromal tumours (GIST). Long-term analysis of the EORTC, ISG, AGITG intergroup Phase III randomized trial on imatinib at two dose levels. Results Study 62005

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New Trial CABOGIST now open

Cabozantinib in patients with metastatic gastrointestinal stromal tumor (GIST) who progressed during neoadjuvant, adjuvant or palliative therapy with imatinib and sunitinib. Trial name: CABO-GIST (see more information on our study registry) Agents: Cabozantinib Phase: II Status: Open, recruiting Sponsor: European Organisation for Research and Treatment of Cancer – EORTC Further information https://clinicaltrials.gov/ct/show/NCT02216578 or http://www.eortc.org/clinical-trials/

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