[email protected] www.sarcoma.org.uk

Summer 2011

ConnectProviding information and support about cancers of soft tissue and bone Launch celebrates Sarcoma Awareness Week

rofessor Sir Mike Richards, National Cancer Director, and Ciarán Devane, Chief Executive of Macmillan Cancer Support, joined Sarcoma UK’s Ptrustees, staff and supporters to celebrate the launch of Sarcoma UK at the London Transport Museum.The event coincided with Sarcoma Awareness Week (13-19 June) and showcased an exclusive and inspiring film: ‘All in it together – living with sarcoma’ featuring sarcoma patients and documenting their journey. Continued on page 2

L-R: Lesley Abraham, Judith Robinson, Professor Sir Mike Richards, Ciarán Devane, Lindsey Bennister, Peter Jay, Dr Jane Barrett, Karen Delin, Roger Wilson CBE

Launch Research Community Celebrating Sarcoma Updates from the research Sarcoma help and Awareness Week at the grants that we awarded support is here for you. 4 premiere of our new film 8 and latest research news 10 Join our community From the Chief Executive

The Sarcoma Trust and Sarcoma UK officially joined together to become a new single charity for sarcoma patients, carers, and relatives in the UK, A word from Sarcoma UK carrying the Sarcoma UK name with a new logo and brand. elcome to Connect, Sarcoma UK’s new publication. This is the first edition produced under the new Sarcoma UK Sarcoma UK’s chief executive, Lindsey Bennister, Wbanner and it charts an exciting past few months for said: “It’s a very positive change that will put us the charity. In this edition, you will be able to read about the in a strong position to build on the fantastic work developments of the charity, inspirational events that our supporters have already carried out by the Sarcoma Trust and done, as well as news about progress in research, treatments and care. Sarcoma UK over the last few years but from a new Much is positive and I hope this gives you inspiration, courage and hope. consolidated base of one single organisation.” However, whilst this edition has a celebratory feel to it, we must also Sarcoma UK originated as a company in 2003 remember the families and friends who have lost someone special formed by Roger and Sheelagh Wilson to provide because of sarcoma, and are trying to cope with the devastating effect information and support for patients with these this has. Many others of you are facing difficult decisions about treatment rare cancers. Roger, who was diagnosed with soft options, or coping with side effects of treatments and the impact this tissue sarcoma in 1999 explained: “Even after two has on daily life. This edition of Connect tells you about the years I had never knowingly met another patient support that is out there for you – places where you so when we started to offer information and can go physically or ‘virtually’ – to talk to others develop new lines of contact for others it was also support for us.” for emotional support, friendship, and to share experiences. I hope you find it useful. By 2007 Sarcoma UK had contact with over 600 Best wishes other patients and was working with national

organisations such as NICE, the National Cancer Action Team, Macmillan Cancer Support and the Lindsey Bennister Chief Executive National Cancer Research Institute. Sarcoma UK was also attracting donors wishing to support research into these rare cancers. With other patients There are around 70 different and carers met through Sarcoma UK’s work, the What is sarcoma? sub-types of sarcoma within the Sarcoma Trust was founded as a registered charity Sarcomas are rare cancers that develop three broad categories. These to handle donations and fund research. in the supporting or connective tissues sub-types are determined by the of the body such as muscle, bone, tissue of origin (the tissue in the By April 2010, as a result of increased financial nerves, cartilage, blood vessels and fat. body where the tumour originally support, a new business plan for the Sarcoma Trust formed), genetic characteristics had been developed and a professional team put There are around 3,200 new cases of or by other molecular analysis in place. The implementation of the first stage sarcoma diagnosed each year in undertaken by expert pathologists. of the business plan – consolidation of the two the UK. The most common sub-types are: organisations (retaining the name Sarcoma UK) – Sarcomas are some of the commonest Soft Tissue started and was achieved by the following March. childhood cancers. • Fibrosarcoma Sarcoma UK aims to achieve the best possible Most sarcomas (about 55%) affect the • Myxofibrosarcoma standard of treatment and care for sarcoma limbs, most frequently the leg. About • Desmoid tumour patients and their relatives in the UK through: 15% affect the head and neck area • Liposarcoma or are found externally on the trunk, • Gastrointestinal stromal tumour Funding scientific and medical research into while the remainder will be found (GIST) • Synovial sarcoma causes and treatments internally in the retroperitoneum • Rhabdomyosarcoma Delivering support and information services (abdominal area). • • Leiomyosarcoma Raising awareness of sarcoma amongst the • • Types of sarcoma Malignant peripheral nerve sheath public, healthcare professionals and policy • tumour (MPNST) makers Sarcomas fall into three broad categories: • Angiosarcoma • Campaigning on behalf of sarcoma patients for Kaposi’s sarcoma (KS) improved treatment and care. Soft tissue cancers • • Bone • Primary bone cancers The Board of Trustees continue to provide a Chondrosarcoma Gastro-intestinal stromal tumours • strong patient focus. Roger Wilson is Sarcoma • Chordoma (a type of soft tissue sarcoma found • UK’s Honorary President, and Professor Ian Judson • Osteosarcoma in the stomach and intestines Ewing’s sarcoma from the Royal Marsden Hospital is Sarcoma UK’s • commonly known as GIST) Giant cell tumour (GCT) Scientific/Medical Advisor. • Cover picture: Patricia Rayner

2 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Fundraising

Team Sarcoma scales new heights

Vicki Smith, Sarcoma UK’s Head of Fundraising and Marketing, gives an insight into the charity’s first fundraising event – The Wainwright Bagger

ver a wet and windy weekend, ten Sarcoma UK Wainwright Bagger Osupporters (and a dog) rose to the challenge of climbing seven 11th June named Wainwrights in the Lake 1. Coniston Old Man (803m) District and the infamous Scafell Pike, 2. Brim Fell (795m) the highest mountain in England. 3. Swirl How (804m) 4. Wrynose Pass (393m) The team met at Hawkshead Hostel 5. Crinkle Crags (860m) on Friday evening and tucked into a 6. Bowfell (903m) hot meal before being briefed on their 7. Esk Pike (885m) challenge ahead by the Mountaineer Guide, Ashleigh. Fittings and Distance covered: 23km alterations were made to rucksacks, Time: 14hrs 30min walking boots, hats and gloves all Height gained: 1630m On the top of before the team snuck into their Scafell Pyke: (l-r) The big climb went via Brown Tounge, bunk beds ready for their early rise Wendy Moffatt, Hollowstones and Lingmell Hawse 12th June on Saturday. Lesley McAully, until finally, the group triumphed • Scafell Pike (977m) Femi Hwesuhunu, and reached the summit of Scafell Distance covered: 8km After a hot breakfast, the team Lindsay Evans, Pike (977m). It was a momentous Ashley Time: 6 hours travelled to Coniston for a spot of St. John-Claire, event (even if visibility wasn’t Height gained: 920m stone-skimming and thought for their Leigh Hibberdine, that spectacular!) and a personal loved ones, followed by adopting a Stephanie achievement for all involved. mantra of positive mental attitude. Riordan, Lindsey Stone, Leigh Hibberdine said: “The whole Andrew Hitch After much jelly-baby and energy team who attempted the climb were bar consumption, the team encouraged and supported by Ash successfully conquered many lake- and it was a real achievement to get land mountains (see panel) in to the summit, particularly emotional fourteen hours, battling against “With a for those who climbed in memory of poor weather conditions and lot of jelly-baby loved ones.” gruelling uphill terrain. consumption, the After this, everybody met at the After an extremely long team conquered Castle Inn hotel for a warm-up in day, Team Sarcoma headed many lakeland the sauna followed by a celebratory straight to their campsite meal and raised their glasses to near Wasdale for a well mountains.” their fantastic accomplishment. As a deserved shower and to rest their group, they experienced many highs tired legs and treat their blisters! and lows, but never forgot the reason why they undertook this challenge and We would like to thank each team Sunday kicked off with a cup of tea their motivations for completing this. member for being part of Sarcoma and a group breakfast to set them UK’s first fundraising event. A special up for their next huge challenge, a Not only did they create a brilliant thank you to Ashley and his dog, six hour walk up England’s tallest bond, they raised over £7,000 for Bracken. mountain, no adverse weather Sarcoma UK which will help to fund conditions were going to stop further medical research We‘ve already started planning next this bunch. into sarcoma. year’s event! www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 3 Launch event

All in it together...

Our launch event at The London Transport Museum showcased an exclusive documentary about patients with sarcoma. What motivated Papercut Pictures to make it for Sarcoma UK?

n 16 June 2011, Sarcoma UK’s inspiring Pippa and Stacey are teenagers with new film All in it together – living with an extremely rare form of sarcoma Osarcoma was premiered at the London called paediatric and wild- Transport Museum, as part of the celebrations type GIST (gastrointestinal to mark the launch of Sarcoma UK and stromal tumour – a type Sarcoma Awareness Week. One hundred of soft tissue sarcoma guests attended, including Sarcoma found in the stomach UK supporters, volunteers, funders, and intestines). Living sarcoma clinicians and nurses, and allied at different ends of the healthcare professionals. UK (southern England and Scotland), the Produced by Papercut Pictures on behalf girls and their families of Sarcoma UK, the film is a poignant have formed a strong reminder of the sometimes devastating friendship based on their effects of this form of cancer. One of the shared experiences and stars of the film is Katherine Stittle, sister desire to raise the profile of James Stittle, the film’s producer. Sadly, of this little-known cancer. Katherine died two weeks before the film’s The film gives an insight into launch. James said, “What she wanted more than their hopes and motivations, and anything was to raise awareness of sarcoma and shows the optimism of young this film is a fitting tribute to my sister and her courage people living with a rare cancer. in coping with sarcoma.” The film is available on our website James Stittle, The film features real-life stories about people’s film producer, – www.sarcoma.org.uk – and is also experiences of living with sarcoma. The footage gives great introducing available on DVD from Sarcoma UK’s insight into what it is like to live with a rare cancer that no- the film and head office. If you are planning an awareness event, the one understands or knows about, and the steps people take (inset) his sister, film will be a great way of telling people about the real Katherine to live positively when faced with an uncertain future. impact of sarcoma.

Stacey (left) and Pippa Papercut Pictures pose on the other side of the camera!

4 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Launch event

Guests mingle post-film to discuss issues surrounding sarcoma

Papercut Pictures is an independent film company dedicated to producing fresh and creative video content for charities, organisations and NGOs. For more information, contact: • [email protected] • facebook.com/papercutpictures • www.papercutpictures.com All pictures: Patricia Rayner

www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 5 Fundraising

Getting involved!

Some of our fundraisers share their experiences to inspire you to join in our challenges and events

125 mile The course record for the 125 mile race is a blisteringly kayak quick 15 hours. This record has been held for some challenge 36 years. It was the year that it was expected to be Jamie and I Jamie and broken with a crew of two world champions being put completed Andrew together; however the fastest time that they were before the Devizes to and after able to produce was just over 18 hours, putting some Westminster their kayak three hours on top of their expected times, which Challenge with challenge gives you some indication of just how slow the River an official time Thames was. of 28:57.30 and it was quite For all of those who have sponsored us I would like to honestly the thank you once again for your very kind generosity in most brutal and punishing helping us raise £8,000. thing that I have ever done Andrew Brookes in my life. We lost a lot of time due to some equipment failure through the night, Richard Sumner Memorial Golf Day meaning both Jamie’s and my We held another successful golf event in Richard’s backs were extremely sore, memory and in aid of Sarcoma UK in June. It was mostly not so much when we were dry, but otherwise ideal (l-r) Vice- paddling but actually getting in and out of the boat, which Captain Steve golfing weather. The added some two hours to our time. This was coupled with Brookbanks, 64 golfers, family the River Thames being at its lowest in flow for many Mike Sumner and friends had a years, which equated for one of the highest dropout rates and Captain competitive and ever in the race’s history. Phil White very enjoyable at Fulford Heath day. All the clubs enter into a team event, which is made up Golf Club, of three crews and due to the number of people dropping Birmingham We raised out we were successful in winning the senior doubles team £1,500 and event, which is a great achievement for us and the club. Don’t forget have already set We were 76th out of 97 crews that finished, with 36 crews to let us a date for next pulled out on the way. In all categories, we came 90th out know about year – Friday 22 of 108 finishers and there were 53 crews that pulled out – your fundraising June 2012. events effectively over a third pulled out during the day. Mike Sumner

Challenges & Events Skydives Running Running Various dates BUPA Great South Run Virgin London Marathon Take advantage of this once in a 30 October 2011 22 April 2012 lifetime opportunity and jump for We have 20 places in We have one silver place in the largest Sarcoma UK. If you raise the minimum this running event with a public participation sporting event in amount of sponsorship, you get to dive fantastic atmosphere. the country. out of a plane for free! Location: Portsmouth Location: London Tandem Skydive: £395 Registration Fee: £35 Registration Fee: £150 Static Line Square: £360 Sponsorship Level: £350 Sponsorship Level: £2,000 Accelerated Freefall: £535 Distance: 16km Distance: 42km For further information about these challenge events, contact Vicki Smith, Head of Fundraising and Marketing, by email: [email protected] or phone: 020 7250 8271

6 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Personal experience

Sarcoma brings together two long-lost friends

After Hilly Cansdale bumped into an old friend, they had a lot to catch up about ... little did they know they had been living in the same small town, with the same rare sarcoma and a similar story to share

ack in 2002 I started a piece a few little ‘friends’ which had grown for Sarcoma Magazine with the nearby. When asked by those who Bwords “I am a large woman.” were curious where the tumour was, This time I begin with “I live in a small I explained: “If you poked a knitting town.” In January, 2002 I had a very needle through your chest between large (14lb) liposarcoma removed your ribs, through all the organs leaving behind a ‘stump’ (in layman’s there, and hit the spine – that’s where terms). Thanks to my brilliant it’s growing.” It is unfortunately a surgeons, life continued and the years horribly difficult place for my poor rolled on. They seemed to be ‘bonus surgeon to reach. Luckily I was able years’. to turn again to the same surgeon in Taunton, who ‘knew his way around’! Then about three years ago I was out walking in the countryside and Since the operation, friends and bumped into my friend, Priscilla acquaintances in our small town have Mills, walking her dog Hamish, and been following our joint progress as I hadn’t seen her around for a few and, I might add, been fantastically months I expressed surprise. “Oh, supportive with offerings of food (on I’ve been ill,” she said. “I’ve had an a rota!) and care of all kinds. This is enormous (1½ stone) liposarcoma really the Big Society in action ... removed and lost my left kidney!” A month after the op I went to see We could hardly believe that in a the surgeon who told me that the town of just 12,000 people the two tumour in the centre of my stomach of us had shared this experience of area and the one on the left side a very rare tumour growing to such had been removed. It will probably a size. Over the next three years we return, he said, but careful, frequent often met out walking. Then, in late scanning and more surgery would autumn last year, she said: “Mine ‘contain’ the beast. No radio, no has come back.” At around the same chemo. Radiotherapy is apparently time I had occasionally been feeling impossible to use near internal queasy. I suddenly realised that I had organs. Chemotherapy is (thankfully!) lost half a stone in weight – with no Priscilla Mills (left ) and Hilly Cansdale no use, either. effort at all ... and Hamish the dog Just as I was about to leave the So I decided to drop a line to my and, it seems, like the Hydra, if you consultation I mentioned the pain in surgeon telling him of this. Christmas cut off one head, two sprout in “In a town my right side, still there after the and New Year came and went, during its place! operation. He suggested that I which I was also suffering from a pain of just 12,000, “pop along and have an ultra- in my right side. I had a really horrible So, within a week of each two of us have sound”. cold, too, and felt quite ill for three other, my friend and I went or four weeks. In January, therefore, into two different hospitals for shared experience The radiologist, fully aware of I followed up my earlier letter to the our operations. Her sarcoma of a very rare the three different cancers I’ve surgeon and the wheels were set in had sent a tentacle down into tumour.” had since 1996, casually remarked motion: a CT scan and PET scan, the her thigh muscle – not good for “Oh, you have a 2cm gall-stone latter showing up a few points of walking, we both agreed. Mine had blocking your bile duct.” My ‘activity’. The sarcoma had re-grown grown to the size of an orange, with husband couldn’t help laughing. www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 7 Research

Sarcoma UK research grants

n 2009, Sarcoma UK awarded £255,000 in research Defects of DNA repair genes and cell cycle grants – a significant financial commitment from a regulators as a predisposing cause of sarcomas Ismall cancer charity. Four projects were awarded Research team: Dr Karen Sisley, Dr Abdulazeez funding for research that ranged from basic laboratory- Salawu, Dr Martin Robinson (University of Sheffield) based science through to qualitative research with Funding: £75,790 over three years patients. The grants that we have funded are: This is a basic science project, finding out more about Identification of direct downstream targets how chromosome abnormalities in the nuclei of sarcoma of the PAX3-FOXO1 and MYCN proteins in cells might upset the regulation of cell turnover. If the alveolar rhabdomyosarcoma as potential researchers can understand more about this it might be therapeutic targets an opening to developing new approaches to treatment. Research team: Dr Janet Shipley, Dr Zoe Walters, This project is in year two. Dr Edoardo Missiaglia (Institute of Cancer Research, London) A prospective observational study to evaluate Funding: £23,266 for one year the quality of life of patients with locally advanced and metastatic soft tissue sarcoma Deaths from cancer in children are, thankfully, rare. Research team: Dr Julia Riley, Dr Claire Smith, However, a leading cause of cancer related deaths in Prof. Ian Judson (Royal Marsden Hospital) children is rhabdomyosarcoma, a soft tissue sarcoma. Funding: £126,409 over two years More effective treatments are urgently required and Dr Shipley proposed that increased understanding of the This project is in its final year. It is a clinical study that underlying molecular mechanisms in development and is not a trial but involves patients in order to look at spread of rhabdomyosarcoma would yield new angles for the quality of life of patients being treated for advanced investigation. sarcoma. People with locally advanced or sarcoma that has spread, or whose sarcoma has recurred after surgery, The project was successfully completed in February 2011, may only be eligible for palliative treatment, so quality of according to plan. life becomes the primary concern rather than defeating the sarcoma. They found some new gene targets which look as if they could be promising ‘ways in’ to researching new Because the intention is palliation it is important to treatments. Whilst there is still a very long way to understand what determines the quality of life in these go these are now being investigated further in their patients especially when chemotherapy will have side laboratory or will form the basis of future research. In effects. In addition, the study will try to identify markers particular, she and her team were studying what can make found in blood tests that might predict prognosis since rhabdomyosarcoma such an aggressive cancer. The results this might help decisions on which treatment to use. of this successful study are currently being prepared for If this is possible, chemotherapy could be avoided publication. One of the genes identified is already under in people who will not benefit from it, which would intensive investigation in order to develop a therapeutic Log on to improve their quality of life. approach against it (in collaboration with the Centre for the research pages on Cancer Therapeutics at The Cancer Research Institute). www.sarcoma. This will help the development of clinical practice and also org.uk to find gather valuable data to aid health economic analysis of Developing a preclinical and clinical system out more new treatments. for oncolytic virotherapy using isolated limb perfusion Research team: Dr Kevin Harrington and Dr Tim Sarcoma UK is currently putting in place new plans and processes Pencavel (Institute of Cancer Research, London) to fund a further set of research grants in 2012. We are setting Funding: £30,014 over 2 years up a Research Advisory Committee which is an independent group of leading experts – scientists and clinicians – in the Currently in year two, this is an example of a sarcoma research field who will advise the charity on the quality translational research project, looking at ways to transfer results from the laboratory into a clinical trial for of the applications we receive, to ensure that we are funding patients in a Phase 1 trial. They are developing a system the best projects. More information about our new grants for treating limb sarcomas using Isolated Limb Perfusion management processes and the development of a new research (ILP) as well as oncolytic virotherapy (anti-cancer strategy can be found on our website: www.sarcoma.org.uk viruses). They are hoping to use the results to move on under Research to designing a Phase 1 trial.

8 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Research

Clinical trials in sarcoma

hen the first Sarcoma UK newsletter was If you feel that a clinical study might be of value you published in 2003 there were six clinical trials should talk to your doctors. Our listing of studies does not Wavailable in the UK for sarcoma patients: one include details of availability at which treatment centres, each in Ewing’s sarcoma and osteosarcoma, one in GIST, or of patient eligibility requirements. Your doctors can and three in soft tissue sarcoma (two paediatric). access this information.

Today’s list of open clinical studies numbers fourteen For information on European clinical trials, see below. and a similar number are currently in development. It demonstrates a growth of interest in these rare tumours by the pharmaceutical industry, the availability of European Union register of authorised academic funding from new European sources for studies clinical trials to appear online in rare cancers, and a strong UK commitment supported A new public website giving information on all authorised by the National Cancer Research Network to develop clinical trials being conducted in the EU has been relevant UK trials. launched. At any one time it is anticipated that it will have

Table 1. Clinical trials in sarcoma SOFT TISSUE SARCOMA VORTEX Phase III randomised trial evaluating impact of changes in volume of post-operative radiotherapy on morbidity and limb function in adult patients with extremity soft tissue sarcoma. VORTEX Prospective sample collection for the VORTEX randomised radiotherapy trial in adults with extremity soft tissue sarcoma. BIOBANK GeDDIS Phase III prospective randomised controlled trial of gemcitabine+docetaxel compared with doxorubicin as first line treatment in previously untreated locally advanced, unresectable or metastatic soft tissue sarcoma. Available to teenage patients. TRUSTS A Phase III randomized study of trabectedin versus doxorubicin in first-line for patients with translocation-related sarcomas (TRS). Axi-STS Axitinib in patients with advanced angiosarcoma and other soft tissue sarcomas: a phase II open-label parallel-group (non-randomised) study. CASPS Phase II study of cediranib (AZD2171) in advanced alveolar soft part sarcoma. PICASSO Phase III randomised study comparing palifosfamide versus doxorubicin in first-line. PAEDIATRIC SOFT TISSUE EpSSG RMS Treatment of children and young people presenting with non-metastatic rhabdomyosarcoma. The protocol contains a 2005 randomised trial for “high risk patients” and observational studies for patients categorised in other risk groups. EpSSG A trial looking at the treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up non-Rhabdo to 21. BERNIE Children <18 with newly diagnosed metastatic disease. Phase III randomised comparison of chemotherapy with/without bevacizumab. BONE SARCOMA EURO- Combination chemotherapy with or without peripheral stem cell transplantation, radiation therapy, and/or surgery in treating EWING patients with Ewing’s sarcoma. EURAMOS 1 A Phase III randomised trial of the European & American Osteosarcoma Study Groups – strategies for resectable osteosarcoma based on response to pre-operative chemotherapy. OTIS A Phase II study to determine the efficacy and safety of conventional dose oral treosulfan in patients with advanced pre-treated Ewing’s sarcoma. GIST GRID Phase III randomised study using regorafenib in third-line for advanced GIST. www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 9 Research

the details of up to 10,000 studies in has identified gynae sarcomas as an all diseases. international collaborative research priority. A meeting took place in The main objective of the Register December 2010 which set up a of Clinical Trials is to increase structure to develop clinical studies, Join the sarcoma community transparency and avoid duplication and a meeting in June 2011 has taken of trials. It includes clinical trials matters forward. conducted by academic any sarcoma patients and carers have researchers and by the The focus is to develop told us that they often feel isolated and pharmaceutical industry “The specific clinical trials Malone. Some people have never met or in one or more EU Register’s main which can test new spoken to someone else with sarcoma or another Member States. drugs to treat carer of a sarcoma patient. objective is to these rare and The Register includes increase transparency often aggressive Help and support is here for you! Join Sarcoma information on the cancers. Some UK’s online groups to talk to others, or go along results of clinical trials. and avoid gynae sarcomas are to one of the sarcoma local support groups that Results of all clinical duplication.” hormone receptor meet regularly throughout the UK. trials – including trials positive, which means which ‘failed’ to achieve their that they can be treated desired objective or did not produce with drugs usually used to treat Online the expected results – are a valuable breast cancer. By developing Sarcoma UK’s online support groups are there source of knowledge, which patients combinations of these ‘aromatase to give you regular contact when you need it and patient organisations are usually inhibitors’ with new genetically with people who share and understand your not able to access. targeted treatments, and with more experiences. Our groups provide you with the traditional chemotherapies, it is opportunity to talk to other patients and carers, The EU Clinical Trial Register is at: hoped that a breakthrough learn more about sarcoma, and get support for https://www.clinicaltrialsregister.eu in treating these sarcomas can the issues and challenges you are currently facing. be made. The value of this community is that you can access it 24 hours a day, without having to leave Gynae sarcoma – an your home. international priority European Research A meeting between the UK’s Collaboration Sarcoma UK runs three online support groups for: National Cancer Research Network, Five years ago two research • Patients – all sarcomas the European Organisation for the collaborations in sarcoma • Patients – with gynaecological sarcomas Research and Treatment of Cancer, were funded by the European • Carers and the US National Cancer Institute Commission. As Conticanet and Eurobonet have now come to a conclusion, the Commission has How does it work? agreed to fund a further five years Sarcoma patients and carers talk to each other of sarcoma research, the two by writing email messages that are sent to all collaborations merging as EuroSarc. members of the group. Alternatively, you can send a personal email to individual members The collaboration is led by Professor of the group and communicate directly with Jean-Yves Blay and thirty sarcoma individuals. research institutes around Europe are members, including centres in Oxford, Sarcoma UK has a registration process and Sheffield and London. The UK’s guidelines in place to manage and moderate the principal member is Professor Bass online support groups. These groups are only Hassan, from the Churchill Hospital, open to sarcoma patients and carers and all Oxford. registrations are checked by Sarcoma UK.

The collaboration is planning a To find out more, visit the How We Can Help number of new clinical trials, some in pages at www.sarcoma.org.uk rarer sarcomas, many in collaboration with the European Organisation for the Research and Treatment of Cancer, so that its network of Join the hospitals conducting clinical studies community today! can make these new trials as widely available as possible.

10 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Support groups

Join the sarcoma community

Scotland - Glasgow Meets: Third Wednesday of every month, 2.30 – 4pm Venue: Maggie’s Centre, The Gatehouse, Western Infirmary,10 Dumbarton Road, Glasgow G11 6PA Dawn Currie, Sarcoma CNS - 0141 301 7599 Gillian Hailstones, Maggie’s Centre - 0141 330 3311 Newcastle and Tyneside Meets: First Monday of every month, 7 – 10pm Venue: Education centre, Freeman’s Hospital Cuth Earl, Group secretary - 0191 520 1824

Manchester Meets: Last Tuesday of Jan, March, May, Sept and Nov, from 5pm Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1) (and surrounding areas) Helen Murray, Clinical Specialist Sarcoma Nurse (MRI) - 0161 276 6187 Sheffield (Pager 07659 596823) Meets: Second Friday of Jan, March, May, July, Sept and Nov, afternoon Maxine Cumbo, Specialist Sarcoma Physiotherapist (MRI) - 0161 276 6845 Venue: Cancer Support Centre, 23 Northumberland Road, just behind Lena Richards, Specialist Sarcoma Physiotherapist (Christie) - 0161 446 3795 Weston Park Hospital, Sheffield or Royal Hallamshire Hospital or 0161 446 3000 (Bleep 12539) CNS Judy Darwent, North Trent Sarcoma Lead Nurse - 0114 2261436 CNS Anne French - 0114 2713478 CNS Maxine Eades - 0114 2265621 E: [email protected] W: www.sheffieldsarcomasupport.org.uk

New groups East Midlands (and eastern counties) Merseyside and Cheshire Meets: Third Tuesday of every month, 5 – 7pm Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH A newly formed Sarcoma Support E: [email protected] group for Merseyside and Cheshire met on 14th June during National Sarcoma Awareness Week. Lindsey Bennister, Chief Executive of Sarcoma UK, is Oxford (inc Thames Valley, south and parts of south west England) pictured with Lead Cancer Nurse, Gill Meets: First Thursday of every month, 2-4pm Hamblin and patient representative, Venue: Tebbit Centre, the Nuffield Orthopaedic Centre, Windmill Road, Oxford Cameron Burry.

CRUK Pip Large - 01865 737861; [email protected] Helen Stradling - 01865 738282; [email protected] Exeter W: www.oxfordsarcoma.co.uk/2011/01/oxford-sarcoma-support-group-2011 A new group that meets at the FORCE cancer centre in Exeter; for both sarcoma and melanoma patients, relatives and carers. Contact Sarcoma UK for more information on these new groups London Meets: First Wednesday of every month, 4 – 6pm Venue: Ground Floor Physio Gym in The Markus Centre, Royal Marsden Hospital, London SW3 6JJ E: [email protected] W: www.londonsarcomasupport.net Bristol and South West England Meets: Third Monday of every month, 4 – 6pm Venue: The Windsor Room, Bristol General Hospital, South of England Guinea Street, Bristol BS1 6SY Meets: Second Wednesday of every other month, 2.30 – 4.30pm E: [email protected] Venue: Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton SO17 1DL W: www.bristolsarcomasupport.co.uk Louise Porter, Sarcoma Clinical Nurse Specialist - 02380 777222 (Ext.5059) E: [email protected] E: [email protected]

Always check with the group direct before attending, in case details have changed. If you don’t have a local support group, and would like to set one up, get in touch - call 020 7250 8271 or email [email protected]

www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 11 News

News round-up

The latest sarcoma-related news from around the country

Ewing’s National busy trying to resolve the actual national initiative funding research Multi-Disciplinary Team numbers of sarcoma patients there are to identify routes by which cancer The English national multi- in England, and by simple extension, messages can be given to the disciplinary team (MDT) for Ewing’s the whole United Kingdom. population. Early presentation of sarcoma is now meeting regularly. symptoms by people depends on Sarcoma UK has been told that Analyses of the incidence of bone them understanding what those over twenty bone sarcoma patients and soft tissue sarcomas have been symptoms are, and in certain areas have now been discussed – the MDT published, and although there is there is the need for supportive cannot discuss soft-tissue Ewing’s growing certainty on numbers, and education among doctors to as it is supported by the National on the parts of the body which develop their diagnostic skills. Commissioning fund for specialist sarcomas affect, there are still gaps Lindsey Bennister, Chief Executive bone cancer treatment. in the national data. A new dataset is at Sarcoma UK, recently met with being developed against which new the Department of Health team to The meeting uses web-based diagnoses will be reported. discuss ways of raising awareness of technology to bring together specialist the importance of early detection of surgeons, oncologists, pathologists If you are interested in following this rarer cancers and had the opportunity and radiologists from the five bone work the National Cancer Intelligence to present detailed information about sarcoma centres, and the paediatric Network (NCIN) website is very the problems around early diagnosis and teenage cancer units which treat informative and has links to download for sarcoma. these patients. The meeting is chaired papers developed by WMCIU: by Dr Jeremy Whelan of University http://tinyurl.com/62aun3n College London Hospitals. You advised, The aim of the work is to inform the we listened The main aim is to agree a local NHS, the specialist sarcoma services A total of fifty patients, carers, treatment plan for every patient and and the voluntary sector so that we support group leaders, nurses and through consensus and review of can work together from a solid base allied healthcare professionals management of patients improve the of evidence to improve the standards were invited to a weekend event eventual outcome for all patients. of treatment and care sarcoma in Manchester to help Sarcoma patients receive. UK review its support services, and develop plans for new forms of Sarcoma numbers information and support. getting clearer Early Diagnosis The national cancer registry lead for initiative Six priority areas were identified for sarcoma, the West Midlands Cancer The National Awareness and Early improvement: Intelligence Unit (WMCIU), has been Diagnosis Initiative (NAEDI) is a • Training for local support group leaders, and increased support for Sarcoma Patients EuroNet local groups from Sarcoma UK. • Raising the profile of Sarcoma UK Sarcoma Patients Euronet (SPAEN), the international association and its services so that everyone of patient groups concerned with sarcoma (and of which Sarcoma diagnosed with sarcoma knows UK was a co-founder) has launched its website at www.sarcoma- about the support available. patients.eu • Telephone service for carers. • Annual meeting/event for sarcoma SPAEN held its 2010 annual conference in November in Madrid attended by about patients and relatives. 40 delegates including representatives from Sarcoma UK and GIST Support UK. • Patient information pack produced The conference aims to raise the knowledge of patient groups about standards of by Sarcoma UK that is given out on care and treatment by bringing patients together with leading doctors to discuss diagnosis. key topics. The next conference will be in Berlin in autumn 2011. • Developing our online presence including the creation of an online SPAEN is a partner in the EuroSarc research collaboration and will be providing a forum. patient view on the development of new clinical trials in Europe. We are currently working to improve these areas, so watch this space!

12 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk News

National Cancer Patient Experience Survey (England) – sarcoma shock The Cancer Patient Experience Survey undertaken by the Department of Health Key findings in 2010 in England was published shortly before Christmas. It is the second such survey and is probably the biggest survey ever undertaken among cancer patients 80% of sarcoma patients waited less than anywhere in the world, with over 67,000 people responding. 4 weeks for their first appointment. But this compares poorly with other cancers and For the first time a deliberate attempt to survey rarer cancer patients was made sarcoma was in fact the lowest figure out of all and sarcoma was selected to be a distinct sub-group in the analysis. This gives a sub groups. In breast cancer waited less comparison between the experiences of sarcoma patients treated in the NHS with 96% other more common tumour types, and with the ‘average’ cancer patient. than 4 weeks and the overall figure for other rare cancers was 86%. This also implies that Of the 67,000 responses 713 were from sarcoma patients, about 1% – a fair 20% of sarcoma patients are waiting longer representation within the overall study. The results will come as little surprise to than 4 weeks. many with sarcoma. Only of sarcoma patients thought In almost every question asked about treatment, support, information and 68% explanation, and access to specialist nurses, sarcoma patients gave the they were seen soon enough, again the lowest lowest score. figure in the survey. Overall 77% of patients said that the gap between the time when they The survey showed no significant differences between tumour groups regarding the first thought something might be wrong and trust patients felt in their doctors and other clinical staff. 83% of sarcoma patients when they first saw a hospital doctor was less felt their doctors knew what they were doing, quite a bit higher than those for than 3 months, while the figure for sarcoma other rare cancers though lower than most of the more common cancers. was 63%. The huge amount of data in the study is analysed in a number of reports published by the Department of Health. It includes age and gender based 61% of sarcoma patients said their health did analyses (not by tumour type) and a report for every hospital trust treating not deteriorate while they waited, whilst 39% cancer (158 of them). The full study and trust reports can be found at had felt that their health had deteriorated. http://tinyurl.com/3x8x8mz Only 43% of sarcoma patients were given Professor Sir Mike Richards, National Cancer Director, has acknowledged the poor written information about their operation. showing for sarcoma, and for other rarer cancers, in the study. A number of actions are being taken to try and make changes which will improve the situation. He has On a positive note, when asked about being committed to repeating the study in 2012. given information on self-help support Meanwhile Sarcoma UK is reviewing its information provision and, by working with groups, 76% of sarcoma patients were given the specialist centres treating sarcoma, we will help improve the quality of the such information, more than several other information offered to new patients. tumour groups including most rarer cancers.

A royal As well as founding Sarcoma UK, Roger blessing has played a significant role in raising We are delighted that Sarcoma awareness of sarcoma including UK’s founder and now Honorary as a patient representative with President, Roger Wilson, was the National Cancer Research honoured with a CBE in the New Institute (NCRI) and Network Year Honours for services to (NCRN), spending three years on healthcare. In June, Roger and the Board of NCRI, and chairing his wife Sheelagh were invited to the patient group within NCRN. Buckingham Palace and Roger was He has been a patient representative presented with his medal. Roger said: and Advisory Board member with the “We climbed the grand staircase, I Cancer Reform Strategy since 2007, Roger holds up was briefed on what would happen and has been active in the National his CBE medal and what to do, and then after what Cancer Survivorship Initiative. awarded by the Queen seemed like an interminable wait, I took my turn and stepped forward Roger has also recently been awarded British Ceremonial Arts Limited to meet the Queen. It’s a moment to an Honorary Doctorate by the remember.” University of Sheffield. www.sarcoma.org.uk Connect • Sarcoma UK • Summer 2011 13 Treatment

Treatment update

We bring you a selection of national and international developments in the treatments of sarcoma

Funding new treatments treatment of soft tissue sarcoma New drugs demonstrate in the NHS we are anticipating NICE and SMC growing research When new treatments become appraisals of these two new drugs. The annual American Society of available internationally there is NICE has deferred a review of the Clinical Oncology (ASCO) meeting no guarantee that the NHS will be appraisal of adjuvant imatinib is the favoured venue for the able to make them available to UK undertaken in 2010, anticipating announcement of important results patients. The National Institute that new evidence from clinical from clinical trials. for Health trials will be published in the next and Clinical twelve months. The recent growth in trials for Excellence sarcoma is now being reflected by (usually known results which promise to change as NICE) reviews 23andMe – international clinical practice. new technologies genetic study for England and Wales while the In autumn 2010, Sarcoma UK was In recent years trabectedin Scottish Medicines Consortium (SMC) made aware of an international (Yondelis®) became the first new does the same for Scotland. philanthropically-funded study treatment for advanced sarcoma looking at the genetics of sarcoma. in twenty years. Now pazopanib In recent years NICE and SMC have 23andMe is a commercial genetics (Votrient®) has shown positive approved NHS funding for imatinib analysis service and the sarcoma results from the PALETTE trial and sunitinib for GIST, and NICE work is funded through connections and we have been told by the has approved trabectedin for soft with Yahoo, Google and other IT manufacturer, GSK, that it is tissue sarcoma. However, in July organisations. applying for a licence to treat the Scottish Medicines Consortium advanced sarcoma. announced that it has not accepted The aim is to build a ‘Sarcoma trabectedin for use in Scotland Community’ with up to 1,000 Ariad Pharmaceuticals, a small US because “uncertainties in the clinical participants initially whose genetic based biotechnology company, has and economic evidence submitted information can inform researchers. also announced positive results from by the manufacturer, together with More than 350 its SUCCEED trial of ridaforolimus. the high cost of the treatment, members have This offers a maintenance therapy meant it was not considered to be now contributed for patients who have responded to value for money”. saliva samples chemotherapy. MSD Oncology is for genotyping applying for a licence for this new The most recent NICE appraisal has analysis and have treatment. been for mifamurtide (Mepact®) answered a number for the treatment of osteosarcoma of questionnaires to give background Imatinib (Glivec®) revolutionised patients younger than 30 years information. We know that a the treatment of GIST a decade ago. old who have had their disease good number of UK patients are Now trials using it as an adjuvant completely removed by surgery. participating. therapy to prevent relapse following surgery are coming to fruition. The mifamurtide appraisal is the first The website at www.23andme.com/ A Scandinavian/German study that NICE has ever undertaken for sarcoma has further details. If you compared the benefits from three a children’s cancer and it presented register an interest 23andMe will years with one year of treatment them with many challenges, reflected send you a pack by which you can for patients with a high risk of by the number of meetings the donate a saliva sample via a recurrence. Appraisal Committee needed to make pre-paid courier pack. (You can of a decision. At the time of publication, course withdraw by not returning The results were welcomed by a decision is still to be made by NICE the pack.) doctors and patient organisations and the SMC. as setting a new standard for the They will give you a login identity treatment of patients with GIST. With manufacturer applications for the website and you can then Adjuvant imatinib is not now being made to the licensing complete questionnaires which approved by NICE for NHS funding, authorities for deforolimus and provide supporting details of health although a review in 2012 has pazopanib (Votrient®) for the and family history. been promised.

14 Connect • Sarcoma UK • Summer 2011 www.sarcoma.org.uk Directory

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Signed: Date: Thank you, your donation will help us fund sarcoma research, support and information programmes. www.sarcoma.org.uk Please return form to Sarcoma UK, 49-51 East Road, London N1 6AH To complement our new brand we have developed a new range of resourses to increase awareness and provide support. We are currently developing our range; however here are some tools to help you get started. www.sarcoma.org.uk Looking for information about sarcoma? Want to join one of our online support groups? Putting on a fundraising event? Sarcoma UK launched its brand new website in June; log on today and find out all about us.

‘About sarcoma’ leaflet This fresh and snappy leaflet is an excellent introduction to the charity and what we do.

Sarcoma UK flyer Simply promotes our website and a great way to spread the word.

Hand out our leaflet and flyer to clinics, hospitals, work places and in your community. It’s a great way to help raise awareness of sarcoma and the charity. Contact us to order your copies.

Sarcoma UK Chair of Trustees 49-51 East Road, London N1 6AH Peter Jay Tel: 020 7250 8271 Chief Executive Email: [email protected] Lindsey Bennister www.sarcoma.org.uk Honorary President Roger Wilson CBE twitter.com/sarcoma_uk Scientific/Medical Advisor facebook.com/uk.sarcoma Professor Ian Judson Registered charity: 1139869 Board of Trustees A company limited by guarantee: 7487432 Lesley Abraham Dr Jane Barrett Connect editorial and production team Karen Delin Editorial: Lindsey Bennister, Vicki Smith and Roger Wilson Nicky Mellows Design: INQ Design Ltd 020 7737 5775 Judith Robinson

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