Together We Can Make A Difference
For Those Affected By Sarcomas!

Please find below reports from the most important congresses and projects:

• ESSO 39
  The annual meeting of the European Society of Surgical Oncology was held this year in Rotterdam from 8 until 10 October. Although ESSO covers the entire field of cancers, it was of interest to SPAEN for a number of reasons. First because the conference paid attention to sarcomas during a session focussing on surgery of retroperitoneal sarcomas in which several well known sarcoma specialists (among others Sylvie Bonvalot and Winan van Houdt) gave presentations.The conference was interesting also because there was ample attention for the role of patients, several presentations during the scientific program were given by patient advocates. There was a session on shared decision making in which Stefan Gijssels, director of Digestive Cancers Europe and a patient himself, gave a presentation on patient perspective on shared decision, and in another presentation a colon cancer patient presented his full patient journey including the decisions he had to make during treatment.
  
  Gerard van Oortmerssen, SPAEN Board Member and chair of the Dutch Patient Plarform for Sarcoma Paitents was appointed as a member of the Patient Advisory Group in 2018 and got the opportunity to organise an entire session during ESSO 39. This session was devoted to the emerging partnership between patients and doctors. During this session Dirk Grünhagen (sarcoma surgeon in the Erasmus Medical Center in Rotterdam) discussed a successful project in which patients participated in the development of the treatment path of sarcoma patients and in the agenda setting for sarcoma research. One of the topics that patients suggested was the effect of the location of the primary tumor on outcome in case of liposarcoma. This patient question led to a research project of which the results were presented in a poster during this conference.
  As second speaker Roger Wilson, honorary president of SPAEN, gave an overview of many instances where patients take the initiative to increase patient involvement in research aiming at better quality of care. Finally Gerard van Oortmerssen gave a presentation entitled ‘The voice of the patient: harvesting the wealth of information on patient discussion forums’. The session ended with a lively panel discussion.
  
  

• 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 advocacy group “National Leiomyosarcoma Foundation” led by Annie Achee and Dr. Mitch Achee, and supported by Sarcoma Patients EuroNet (SPAEN).
  
  The day started with a review on what has been tested in LMS and most recent learnings and failures to pave the way to discussion on how to approach LMS in the future: How should LMS be grouped to make research meaningful, how can methodology be harmonized to enable collaboration across different research groups in the US and Europe? What’s new in LMS genomics, what can we do with and learn from mouse models? Can biomarkers be used in LMS? What’s the status of TKI and immunotherapy in LMS, what can we learn from current findings in LMS tumor metabolism?
  
  Dr. Brian Van Tine, St. Louis, developed a comprehensive and thought-through agenda, Dr. Scott Okuno, Rochester, Minnesota, lead through the day, together with Dr. Jonathan Trent as host of the event. It was agreed to continue this initiative in the following year and to bundle efforts to study and advance findings especially in the field of low-grade uterine LMS (STUMP Uterine smooth muscle tumor of uncertain malignant potential) and PDX models. Dr. Breelyn Wilky, Denver, Colorado, will take the lead in developing the scientific program for the meeting in 2020.
  
  We’d like to thank all participants for taking the time to join this important meeting, and for their commitment and dedication to improving the lives of LMS patients.

• 
  ASCO 2019 - new findings in sarcoma and GIST treatment
  The annual meeting of the American Society of Clinical Oncology (ASCO) is one of the leading congresses in oncology. Professor Bernd Kasper has summarized what's state of the art  in the treatment of sarcoma and GIST and included updates and new findings presented at ASCO 2019 (May 31 - June 4, 2019, Chicago, USA).
  Read the report here:
  pdf SPAEN ASCO 2019 report (247 KB)

• 5^th Bone Sarcoma Networking Meeting: What’s new in Ewing sarcoma and osteosarcoma
  

  “Collaboration is not something that just happens, it needs to be worked on.”
  Jeremy Whelan, UK
  The 5^th Bone Sarcoma Networking Meeting was held May 23/24, 2019, in Prague, Czech Republic, within the framework of the 1. Annual Meeting of the European Society for Pediatric Oncology (SIOP Europe). It brought together scientific and clinical researchers and representatives from sarcoma charities from Europe and the USA, to present and discuss new developments on bone sarcoma. It focused on both Ewing sarcoma, including the work and achievements of the Euro Ewing Consortium (EEC), and on osteosarcoma.
  Read more here.

• SPAEN at the EMSO Sarcoma and GIST Symposium
  Participants of the SPAEN Annual Conference 2018 in Milan, Italy were also welcome to attend the ESMO sarcoma & GIST symposium. Additionally, SPAEN also had a chance to address and discuss some of the concerns and thoughts from patient advocate’s perspective during the experts’ conference. The “SPAEN Roundtable Session” was held on Wednesday, February 7, at 15:30 pm. Roger Wilson and Paolo Casali hosted the session.
  Roger Wilson and Jean-Yves Blay discussed the highlights of the SPAEN Roundtable session in a video: Watch it here!

• SPAEN at the Euro Ewing Consortium meeting 2018
  The Euro Ewing Consortium is a EU-funded project with the aim to find new or improved treatment options for Ewing sarcoma. Within this project, two trials (rECCur and Euro Ewing 2012) are conducted in several countries and a lot of basic research in tissue samples, cell lines and for biomarkers is undertaken.
  The 2018 winter meeting took place January 17-18, 2018 in London, UK. The 2 day conference began with an interactive workshop ran by Professor Bernadette Brennan, UK. Those attending the meeting were asked to discuss what future trials in Ewing’s should or could look like. Questions included the when and what of local treatment options or the integration of Quality of Life evaluation and Patient Reported Outcomes among others.
  Throughout the meeting attendees heard exciting updates from both researchers carrying out work in Ewing sarcoma and clinicians leading clinical trials in the field (such as Euro-Ewing 2012 and rEECur). Furthermore, novel agents are monitored for possible testing in Ewing sarcoma. This year, PARP inhibitors, Bayer’s regorafenib, Pfizer’s palbociclib and Oncternal’s TK216 (developed by Jeff Toretzky) were in the focus of the discussion.
  This year’s meeting was the largest ever. Especially notable is that there was a relatively large group of patient advocates there: Sarah McDonald from Sarcoma UK and Zoe Davison and Hannah Birkett from Bone Cancer Research Trust, Chris Copland from Unite2Cure, Jane Wingrove (UK), Andy Westwood (UK, SPAEN supporter) and Yasmin Uhlenbruch (Germany) and Kathrin Schuster, SPAEN.

• Rarer Cancer Patient Advocates Training Course held under the auspice of Rarer Cancers Europe by ESMO and ESO – 2^nd to 4^th December 2017 in Milan.
  This course was held alongside a Rarer Cancers Training course for oncology professionals and there were overlaps between the two events. An initial plenary session on the Saturday included talks from Kathy Oliver (IBTA) and Francesco Di Lorenzo (ECPC) putting forward a patient view on issues affecting rare cancers and initiatives to raise awareness and political action.
  
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  The Patient Advocates sessions started after lunch on the Saturday and the initial sessions covered clinical issues – diagnosis, surgery, oncology and research. Individual clinicians and scientists came from the professional event to talk for 20-30 minutes on a defined topic and to answer questions. These sessions were lively with lots of issues and new ideas put forward by the speakers, and plenty of challenges from the advocate audience to keep them on topic.
  The research session was particularly lively when Dr Paolo Bruzzi (a statistician) and Dr Paolo Casali (medical oncologist) came together to talk about probability statistics in a session chaired by Roger Wilson, SPAEN Board member. At one point they put forward a hypothetical trial of intercessory prayer and examined how the probability issues would affect it, and how it would compare with a study of a more usual medical therapy. The subject of combination therapy was raised, which caught both scientific speakers unprepared. A humorous moment.
  The final session on Monday looked at advocacy issues. Roger again spoke, drawing on his long experience as an advocate, and among the case studies put forward Estelle Lecointe-Artzner, SPAEN Board member, talked about the Pathway policy paper published by SPAEN in January.
  The whole combined event closed with words from both Dr Casali and Roger Wilson, recognising the value of parallel events for both clinical specialists and patient advocates.
  By Roger Wilson, SPAEN Honorary President
  More info: http://www.esmo.org/Conferences/Past-Conferences/RCE-ESMO-ESO-Training-Course-for-Rare-Cancer-Patient-Advocates-2017

• “Harvesting Patient-generated information from internet discussion forums”, CTOS, November 2017
  During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions on the Internet. Cancer patients, in particular patients with rare cancers, are increasingly active on internet discussion fora in order to get into touch with patients with the same diagnosis.
  
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  On these fora patients share information, get advice from experienced fellow patients and support each other emotionally.These discussions are a rich source of information: patients often share details of there case, both in terms of medical information as well as their experienced quality of life. The collective knowledge contained in these discussion fora can be of much additional value both to patients and medical professionals and researchers. The project Gerard presented is using state-of-the-art methods from artificial intelligence, natural language processing and data mining to find the “gold nuggets” hidden in the discussions.
  Presently there is a working prototype which can be used to analyse forum discussions. The software starts to pre-process all discussion: all the words which have a relevant meaning, such as diagnosis, treatment, complaint, tumor type, drug, are “tagged” and the semantic relations between words in a discussion post are determined. The results are stored in a database. The software tool has a user interface similar to that of search engines such as Google in which one can type one or more search terms. The search algorithm then starts to search the database and presents all the results relevant to the search question. Results are visualised in a network presentation, highlighting relationships between different entities. In addition, the original forum posts relevant to the search term are shown in the interface. Posts can be summarised automatically, in order to facilitate browsing through relevant discussions, and expanded if more detail is desired.
  In the presentation a few examples were given of applications of the text mining tool.
  Research and development of the so called “Patient Forum Miner” is continuing. In cooperation with other cancer patient organisations various applications are explored. Also, a PhD project is started at Leiden University in order to strengthen the scientific basis of the method, in close co-operation with prof. Hans Gelderblom, medical oncologist and GIST and sarcoma specialist at Leiden University Medical Center.
  

• EORTC STBSG Meeting, October 2017
  The STBSG meets twice a year, moving around Europe to enable easier access which allows junior researchers and doctors to get familiar with the sarcoma research agenda. Dr Alessandro Gronchi, a surgeon from Milan has now served his two year term as chairman and is being succeeded by Professor Hans Gelderblom from the Netherlands, a medical oncologist.
  
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  The two day agenda brought delegates up to date with the current range of sarcoma clinical studies open for accrual of patients, and being actively planned. There was much discussion of the fact that there is no large-scale academically led randomised study across a range of sarcoma sub-types, such has been the standard approach to research for several years by the STBSG. In practical terms there is no other organisation which can develop such clinical trials but however willing the clinical researchers are to design and manage a study the absence of new drugs, or of realistic combinations of therapies, to study means that this line of work has come to a halt.
  Dr Gronchi agreed to lead a group to consider development of a neo-adjuvant chemotherapy study, drawing on the results of the recent Italian study matching chemotherapies with tumour types likely to respond. The comparison arm in this study was common and proved to be the most promising. How such a trial, if it proves to be practical, might be funded was another issue.
  The absence of new targeted therapies from industry was commented on by several people. The recent olaratumab Phase 3 study by Lilly is now in follow-up and results might be available at the end of 2018, but are more likely in 2019.
  STBSG expresses the clinical research challenges in a positive way, as it always has done, but sarcoma is now looking for the next breakthroughs in basic research (such as genomics) or in early stage drug development if we are to see a serious upturn in clinical research activity.
  By Roger Wilson, SPAEN Honorary President
  

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  Detailed report of the main results of "ASCO 2017" (June 3-7, 2017, Chicago, USA). The original report was written by Dr. Axel Le Cesne, Gustave Roussy, Villejuif, France, translated into English by Estelle Lecointe-Artzner, France and edited by Roger Wilson, UK and Markus Wartenberg, Germany. We would like to thank our French Colleagues for this extensive and comprehensive piece of work!
  •   pdf ASCO Report on GIST (519 KB)
  •   pdf ASCO Report on Sarcomas
    (605 KB)

• "We need a single consistent approach about QoL, which is not about treatments but about people and about society."
  EORTC Quality of Life Conference, April 20/21, 2017, Brussels, Belgium
  This 2-day conference covered a broad range of topics in Health-Related Quality of Life (HRQOL), patient reported outcomes (PRO), Symptom Research and Cancer Clinical Trials and policies. It is a platform to discuss recent developments of tools as well as other systems for use in clinical trials as well as international developments and research guidelines. Among the 30 senior PRO international leaders was our Honorary President Roger Wilson as speaker, talking about “Pathway to Patient Benefit” and “Survival -diagnosis or lifestyle”. Watch his presentations here:
  PROMS – Pathway to patient benefit?
  Survival: diagnosis or lifestyle?

• pdf eSurge 2016 summary (297 KB)  by Estelle Lecointe-Artzner (SPAEN), Dr. Sylvie Bonvalot, France and Dr. Alessandro Gronchi, Italy
  
  

• Detailed report of the main results of "ASCO 2016" (June 3-7, 2016, Chicago, USA). The original report was written by Dr. Axel Le Cesne, Gustave Roussy, Villejuif, France, translated into English by Estelle Lecointe-Artzner, France and edited by Roger Wilson, UK and Markus Wartenberg, Germany. We would like to thank our French Colleagues for this extensive and comprehensive piece of work!
  folder ASCO 2016 GIST Report
  pdf ASCO 2016 STS, Bone Sarcoma and Demoid Report (403 KB)