Mesothelioma UK
You will read that plans for the MARS 2 surgical study are progressing, a new small scale trial using a virus (HSV1716) via Indwelling Pleural Catheters has opened in Sheffield and that the ADAM study has just about completed recruitment.
In addition I am pleased to inform readers that the MESO 2 chemotherapy trial will shortly start recruitment (initially in Leicester only) and a new Vaccine study in combination with chemotherapy has recently opened in Cardiff (SKOPOS). We have tried to focus on the benefits of Support Groups in this edition and as well as an insight into the benefits Gerry has reviewed all the Meso Support Groups we are aware of in the UK and updated our website and information leaflet.
Progress with our new website is ongoing behind the scenes; we are disappointed this has taken longer than expected but are working hard to get it right. Much of our information is currently being reviewed and going for reprint which is also ‘a big job!’
Naomi is settling into her new Meso Nurse Specialist post in Cardiff and hopefully 2 or 3 more centres will be receiving our support to establish their own regional Mesothelioma Specialist Nurse Post over this next year; this is of course funding permitted.
Currently in England there are 294 lung cancer nurse specialists, 550 for Breast and nearly 200 for Gynaecology. Gerry, Naomi and I are the sum total of Mesothelioma specific nurse specialists. It’s not feasible or necessary for every hospital to have a Meso Nurse Specialist but Meso UK is committed to developing a network of regionally based Mesothelioma Nurse Specialists to ensure that the best possible information, support and nursing expertise are available to everyone affected by mesothelioma.
Sophie our office apprentice left the team recently, we sincerely wish her well in her new NHS job and are very grateful for all her hard work over the last 18 months. We are delighted to welcome Rubina Sheikh to the Admin team, we are sure she will soon get swept along by the team’s enthusiasm for Meso UK and will ensure she introduces herself to you in a future newsletter.
Please do send your comments in regarding what you would like to see us write about or if you have any useful stories or experiences that you would like to share with the wider Meso community. Here’s to spring weather, daffodils and longer days...
Spring Issue 2013
Liz Darlison
Macmillan Mesothelioma Consultant NurseDear Meso UK Supporter
Welcome to the spring edition of our newsletter. I hope you find the contents
make interesting reading. It certainly feels that there is much to feel optimistic
about in terms of research for Mesothelioma.
Meso Foundation 2013 Symposium: “All In” for a Cure!
7th – 8th March 2013 Aria Resort in Las Vegas, NV
www.curemeso.org
---BTOG Thoracic Oncology Course 2013 11th & 12th March 2013 Leicester www.btog.org/events.htm ---21st European Conference on General Thoracic Surgery
26th - 29th May 2013 Birmingham www.estsmeetings.org /2013/venue/meeting-venue
---Mesothelioma Patient & Carer Day
5th October 2013 (Birmingham – details to follow soon) www.mesothelioma.uk.com
---15th World Lung Cancer Conference 2013
27th – 31st Oct. 2013 Sydney
www.2013worldlungcancer.org
Forthcoming
Events for Health
Professionals
Newsletter
Do you want to be part of a mesothelioma survey? Whether you or your loved one has mesothelioma you can help!
The British Lung Foundation and the Mick Knighton Mesothelioma Research Fund are building on the latest
Mesothelioma UK survey to discover more about the diagnosis, claims process, coroner situation and more.
All answers will be anonymous and the results will be provided in a report that will be available to view on the British
Lung Foundation website from May 2013. Just go to www.blf.org.uk/mesosurvey to take part.
Mesothelioma Survey
Whilst this was deemed to be possible, early results indicated extra-pleural pneumonectomy (removing the lining of the chest wall, lung, diaphragm and lining of the heart) in addition to chemo-radiotherapy was not associated with longer or better survival. As a result the study was stopped and results reported in Lancet Oncology, a prominent medical journal.
Meanwhile, surgeons continue to strive to improve the operation for better results. A study published from the USA suggested pleurectomy decortication - removing all visible disease from the lining of the chest wall and lung but sparing as many normal structures as possible such as uninvolved lung, (and where possible) the diaphragm and lining of the heart was associated with patients living longer compared to the more extensive extra-pleural pneumonectomy procedure. Many clinicians however remain unsure if the longer survival was due to a better formulated operation or simply because the patients who received the less extensive operation had less extensive disease and were earlier in the cancer process.
If the result of the less extensive operation (pleurectomy decortication) was due to patients having earlier (less severe) disease, then patients undergoing the procedure in the UK may be subject to the risks of an operation that is as ineffective as the more extensive extra-pleural pneumonectomy. Because clinicians remain unsure, the operation is only undertaken a few surgical centres in the UK. If the results of the less extensive procedure are genuinely better, this may present a treatment option associated with longer and better survival for the given risks and more surgical centres should offer this procedure to suitable patients with mesothelioma. The only way we can more accurately answer this question would be to conduct a study (clinical trial) where half of the patients would receive pleurectomy
decortication (in addition to chemotherapy) and the other half to receive chemotherapy alone. Patients would be assigned to one of the two treatment arms purely by chance as this is the best way to ensure that the patients in each arm are similar, and the length and quality of life would be compared between the patients in the two groups.
Clinicians from the best centres treating mesothelioma in the UK have worked together and designed MARS 2 - a study that asks the question if adding pleurectomy decortication to chemotherapy prolongs or improves the life of patients with mesothelioma. Patients would be assigned by chance to surgery and chemotherapy or chemotherapy alone. If assigned to chemotherapy alone, the treatment will be undertaken in a MARS 2 treatment centre which is likely to be close to where you live. Patients assigned to surgery and chemotherapy will have the surgery undertaken in a MARS 2 approved centre and it may involve travelling to a surgical centre with the necessary expertise and quality assurance necessary to ensure that the operation is performed to the standards required for the study. The operation would involve the removal of all visible disease from the lining of the chest wall and lining of the lung, and removal of the diaphragm or lining of the heart will only occur if it is involved in the disease process (there are no plans to electively remove the lung itself). The cancer tissue will be sent to the best mesothelioma research centres to support better understanding of disease biology and help identify and develop new drug treatments for mesothelioma.
If you would like the opportunity to contribute and take part in a study that would improve the understanding of surgery for mesothelioma and change the way mesothelioma is managed for patients in the future, please keep a look out for a centre closest to you when we publish a list of participating centres in a future edition of the Mesothelioma UK Newsletter.
Consultant Thoracic Surgeon
The first MARS study asked the question if it was possible for doctors
and patients to participate in a study of surgery for mesothelioma.
We joined Greater Manchester Asbestos Victims Support Group (GMAVSG) and became active in the GMAVSG Mesothelioma Support Group in 2006, looking for support, empathy and also striving to increase our knowledge on asbestos in the hope that sharing our experiences could possibly improve the life of others. GMAVSG and the Mesothelioma Support Group certainly ticked those boxes plus many, many more. Meetings, held bi-monthly, are great to catch up, hear speakers deliver on a variety of asbestos related topics, relax in each other’s company and hopefully help one another.
GMAVSG has also provided us with endless opportunities to channel our energies into positive actions regarding asbestos issues.
Together with other interested members, we have attended national conferences, Asbestos Forum meetings including sub-committee meetings held in the Houses of Parliament, been involved in campaigning issues such as opposing the opening of another asbestos mine in Canada and chosen to go to international asbestos meetings in Chicago and Los Angeles.
Within our group events, members are provided with the opportunity to be actively involved in the annual Action Mesothelioma Day by marshalling, chairing, speaking and supporting through attendance at the event - all important components for success. GMAVSG has also provided us with a social agenda, - cream teas at the Hilton and the Manchester Midland, Christmas lunches, canal boat trips, London’s Proms in the Park or simply created the opportunity for tea and a chat at the meetings, often followed by a pub lunch
We draw strength from each other and every member selectively involves themselves in aspects that suit their own personal interests and needs. Some wonderful friendships have developed within the Greater Manchester Asbestos Victims Support Group (GMAVSG).
In fact this account has been written at the foot of Table Mountain, Cape Town as we two holiday in sunny
South Africa.
We initially met when our husbands were undergoing surgery at Leicester,
one having travelled from Ulverston in the Lake District while the other
from Welsh Wales.
What our Support Group Means to Us
DIY SOS
MARS 2 – a New Trial of Surgery for
Mesothelioma Takes Off !
The meeting was well attended by patients with a diagnosis of mesothelioma and their family/carers from across the Thames Valley area. The keynote speaker was Dr Naj Rahman, Consultant and Senior Lecturer for the Oxford Centre for Respiratory Medicine, who discussed new directions in mesothelioma care and treatment which generated much debate, questions and further discussion. Liz Darlison, Nurse Consultant for Mesothelioma UK, spoke about the charity, the work it does and what it has to offer for those affected by the disease.
The group expressed a desire to make the meetings a regular event as a means for sharing experiences and providing mutual support to others in a similar situation and as an opportunity to hear other speakers talk about subjects related to the treatment of and living with mesothelioma.
As such, the group is now meeting once a month, from 2-3.30pm, at a local hotel. It is free of charge and refreshments are provided. The group is open to anyone whose lives are affected by mesothelioma in the Thames Valley, no matter where they were diagnosed or treated. Planned talks include subjects such as nutrition, breathlessness, complementary therapies and financial advice. If you would like to know more about the group or would like to come, please contact Hannah Ball or Melanie Rogers, Advanced Nurse Practitioners in Lung Cancer/ Mesothelioma on 01865 226119 or email
[email protected]
New Oxford
Mesothelioma Patient
& Carer Group
On 14th November 2012 the
inaugural meeting of the Oxford
Mesothelioma Patient and Carer
Group took place, set up by
the Lung Cancer/Mesothelioma
specialist nursing team.
Last September while watching the
BBC programme DIY SOS, where
Nick Knowles, his team and an
army of volunteers go marching into
buildings and proceed to knock
down walls, lift floorboards, open
cavities and pull down ceilings, I
again noticed that there is never any
mention made of the dangers of
asbestos in buildings.
Vera & Marie
Eric Lim
Whilst the credits state that the BBC use Health and Safety consultants, it is never pointed out on the programme that asbestos, if found, must be professionally removed and disposed of. To this end I sent an e-mail to Nick Knowles asking him if they could occasionally mention the danger of asbestos with any kind of DIY project. To date I have had no reply. As I am sure it is not in the interests of the BBC to put anyone in danger or unknowingly expose anyone to asbestos and the risks of this terrible disease of mesothelioma, I wrote to the Director General of the BBC asking him if he would have this issue included in some of the episodes. I sent copies to my MP, Liz Darlison and Papworth Mesothelioma Support Group.
It is my aim to have the dangers of asbestos and DIY mentioned on TV so that millions of people are made aware of mesothelioma. I ask all mesothelioma victims, their friends and families to help in my quest. Write to your MP, write to the BBC, write to programme makers such as Nick Knowles. Let’s make 2013 a year of achievement for mesothelioma.
Sandy McNaughton
HSV1716 (SEPREHVIRTM) is a type of virus
that infects cancer cells and kills them. We know from laboratory studies that HSV1716 gets into mesothelioma cells and can help kill them. A trial using HSV1716 has started in Sheffield. This trial is to find out if it is safe and of benefit to use this altered virus in mesothelioma.
In other cancer trials it has been shown to be safe and of some benefit. To be included, patients must already have a long-term intrapleural catheter. The virus is given through the catheter, and samples of pleural fluid will be collected through it. Up to twelve patients will be included, who will receive one, two or four doses of the
virus at weekly intervals. Follow up visits will be scheduled to conduct various safety and biological activity tests, and CT scans will be done at 1 and 2 months to evaluate response to treatment.
Further information on the trial can be found at:
http://www.cancerresearchuk.org/ cancer-help/trials/a-study-looking-hsv1716-treat-mesothelioma
Consultant Medical Oncologist Weston Park Hospital
Mesothelioma can be treated with surgery, radiotherapy or chemotherapy.
Unfortunately these don’t always work and so we are looking for new ways
to treat mesothelioma.
Administration of HSV1716 in
Patients with Mesothelioma
Prof Penella Woll
The pilot project was coordinated by two Lung Cancer Specialist Nurses from two different Health Boards within South Wales. The patient approached had been initially referred from a third Health Board via the regional Mesothelioma Multi Disciplinary Team meeting.
The patient, Mr G, had discussed his case and associated frustrations and anxieties on a number of occasions in the clinic setting and therefore was approached to take part in this process in an attempt to capture some of his real-time issues. He was eager that his voice was heard and that we as professionals took notice and considered his thoughts.
The commentaries below are direct reflections about the DVD from the Oncologist managing Mr G’s care, the CNS involved in his care and the CNS who interviewed him.
Impact of a Mesothelioma Patient Story on me – The Doctor
I knew the patient very well, and was a little anxious at the thought of him talking about his case to an audience. It felt a bit like the ultimate ‘peer review.’ In all honesty, it was a relief to hear that Mr G did not have issues with the care he received from the Oncology team. We all like to think we provide a good service to patients, but rarely ask them to give an honest view from the patient’s perpective. As an Oncologist, I do not actively ask patients how they feel about the diagnosis and prognosis they have been given. My excuse is that clinic is very busy and once you go down that route, you are obliged to see it through no matter how long it takes. It was a real insight for me to hear Mr G talk openly about his fears and frustrations at having mesothelioma.
I perceived Mr G as being quite a forceful, almost aggressive person when we first met. Hearing him talk about his illness so openly made me see that the forcefulness he portrayed was his way of dealing with his own vunerabilities and fears.
Ideally, I could have given Mr G more opportunity to talk about his disease. We talked about treatment options and symptom control, but never about how mesothelioma affected him psychologically. It may have helped with the future consultations if we had done that early on. He was clearly struggling to come to terms with his diagnosis and I should have picked that up. The truth is that I do not have the time in clinic to do that for every patient, but where patients are having problems, that time needs to be found.
Patient stories are commonly used to demonstrate common themes in the context of service evaluation and patient
satisfaction. A patient video was produced as a pilot to consider the logistics of using this tool as a routine method to
review the experiences within our local and regional lung cancer and mesothelioma services.
The Impact of a Patient Story from the Professional Perspective
Impact on Me – local Lung Cancer CNS
I was initially anxious about how some of the issues Mr G may raise would appear as I was aware that he had not had a smooth overall experience. I was keen to ensure that his key issues were properly represented without too much intrusion.
Having the time to listen effectively to all aspects of his story was invaluable. This afforded both Mr G and his wife with the opportunity to explore and discuss elements of what was happening with greater honesty and with a degree of facilitation. The
experience was cathartic for them both. It also reinforced my general thoughts about the lack of peer support for mesothelioma patients locally. It was useful to hear what we did get right as a team and how his confidence had grown with our delivering what we said we would. It has underpinned for me the gaps that could have been filled had a support group been in place. Mr G was always keen to have other experiences to compare with but felt restricted by hospital protocol when trying to find other mesothelioma patients at his clinic and treatment visits himself. The visual that the video added provided further insight into Mr G’s lifestyle and personal space. This context was poignant as it illustrated how life moves on and yet Mr G felt he wasn’t living with mesothelioma but stated that he was dying with mesothelioma. I recognised early on that Mr G was perceived as a forceful character but appreciated his background and his need for order and insight. His behaviours demonstrated the fact that he was frightened and was battling with the loss of control his mesothelioma introduced. His comments in the video comparing his diagnosis to death row was particularly powerful as he appeared to maximise his good days and filled them with activity when he spoke with the Oncologist. The video has provided me personally with food for thought and having such personal thoughts shared by an individual was truly humbling.
Impact of a Mesothelioma Patient Story on me (a lung cancer CNS) the interviewer
When I met Mr G and his lovely wife for the first time, he was very keen to tell his story and had prepared a script. It was immediately obvious how much thought had gone into the context. He was anxious to know if the material would be suitable. I reassured him this is his story; as such the information would definitely be appropriate. However I did not anticipate the impact his story would have on me.
This is the opening sentence from the prepared
statement:-‘My name is Mr G, I am 68 years young and I am DYING of Mesothelioma.’ I was shocked and saddened by this powerful introduction. As expected Mr G talked about: - his complex diagnostic pathway; shock at diagnosis; shock that there is no cure; shock at poor prognosis (told 18 months); dismay and anger that mesothelioma associated with previous asbestos exposure whilst working within industry; compensation process and issues; he described intolerable side effects from chemotherapy and symptoms including pain and breathlessness etc., etc.,
However, he also disclosed other factors not usually discussed within a busy outpatient setting. Mr G articulately described the real impact mesothelioma has on his life. These are just a few examples:-
• Relationships changes with loved ones; ‘I’m restless at night and have a lot of pain, so no longer sleep with my wife’. ‘We have lost that closeness – it’s not her, it’s me!’ ‘We still love each other – but it’s not the same’.
• Robbed of his independence; ‘I’m no longer able to tend my garden, mow my tiny lawn even sweeping the path is too much’ ‘Cannot take dog for walk, too breathless’. ‘Not fair to put all this on wife, she already has enough to do.’
• Persistently limits social activities; ‘I go to local pub once a week with friends, only down the road’ – ‘Have to drive there now, not able to walk’ ‘We have a caravan, beautiful views - but at top of hill’ ‘Incapable of going for walk anymore’ • Limits social interaction with others; ‘Went
to a family wedding, so difficult to chat in a group – no breath to talk’
• Short prognosis; ‘My grandson just passed his test – if doctor is right I will not be around to see my other grandson pass his test’ ‘That’s hard’. I’ve been robbed of my life’.
• Mesothelioma is completely affecting every aspect of his life.
Mr G’s closing statement:
‘I understand how a chappie on death row feels. I’m living it. Then I’m gone’.
Naomi Horne
(Mesothelioma UK
/Macmillan Lung Cancer CNS,Cardiff),
Carol Davies
(Macmillan Lung Cancer CNS, Abergavenny)
Dr Jason Lester
(Consultant Clinical Oncology, Cardiff)
Official name ‘A Multicentre Randomized Phase II Trial to Compare Best Supportive Care to Pegylated Arginine Deiminase (and Best Supportive Care) in Patients with Malignant Pleural Mesothelioma’. Chief investigator Dr Peter Szlosarek from Barts and The London School of Medicine recently published a case study paper relating to the trial in the Journal of Clinical Oncology (Metabolic Response to Pegylated Arginine Deiminase in Mesothelioma With Promoter Methylation of Argininosuccinate Synthetase Published Ahead of Print on January 14, 2013 as 10.1200/JCO.2012.42.1784). Dr Szlosarek has advised the
mesothelioma community the trial has now just about completed recruitment so no further participants are required at this time. It will be several months before results are available; as and when we hear more we will keep you posted.
ADAM
(Arginine Deiminase
and Mesothelioma)
Study Update
Many of you will have heard about
this study, some of you may be a
participant or involved in recruiting
patients.
Liz Darlison
Save the Date!
Mesothelioma UK Stakeholder Day 24th June 2013
Clinical Education Centre, Glenfield Hospital, Leicester
Further details available soon on website:
www.mesothelioma.uk.com
However, perhaps for the first time, there are several new drug development strategies ongoing. The only NICE approved first-line therapy is pemetrexed and cisplatin.
The Cancer Research UK MESO2 clinical trial aims to open in the first quarter of 2013 and will build upon this “treatment backbone” by exploring the activity of a new class of drug called a “heat-shock protein 90 inhibitor”.
Mesothelioma depends on specific growth factors for survival. These factors in turn, depend on heat-shock protein 90. When targeted, mesothelioma cells are killed efficiently suggesting that this drug may be active in the clinical setting.
The drug ganetespib is being studied in a range of cancers including lung cancer, where it has shown promising activity. MESO2 is a national multicentre clinical trial that will focus on enhancing the activity of pemetrexed/cisplatin, by exploring it in combination with the HSP90 inhibitor ganetespib. This phase 1 trial will aim to identify a safe and tolerable dose of the agent for further evaluation in a randomised clinical trial.
Another approach that has shown success in improving clinical outcomes in lung cancer, is to switch to a non-toxic agent immediately after chemotherapy. This so-called, maintenance strategy allows stabilisation of cancers that have responded to chemotherapy.
A new class of drug called a FAK inhibitor was shown recently to increase the length that mesotheliomas are stabilised, and this was shown to be associated with a common mutation in the cancer called NF2. For this reason, a new clinical trial is planned to evaluate FAK inhibition as a maintenance strategy in mesothelioma.
Other studies exploring combination with pemetrexed cisplatin include the anti CTLA-4 antibody, ipilumumab being developed commercially, and the TroVac study being developed in Wales as an academic clinical trial. Although the NF2 mutation/FAK sensitivity may present an approach to treating patients with genetically defined mesothelioma, other common mutations such as CDKN2A mutation may also be important. CDK4 inhibitors for example may be more effective in the context of this mutation which affects more than half of all patients with mesothelioma. Studies evaluating this strategy are therefore warranted.
In the second line setting, there is currently no available standard treatment. Vinorelbine has shown promising activity as a single agent therapy, however there is no randomised data to support its use, nor is there any proven way of selecting patients who are likely to benefit from treatment. Cancer Research UK has approved the VIM trial which is a randomised study to compare vinorelbine versus best supportive care, and to evaluate specific biomarkers of activity, which should predict who is likely to respond to therapy.
Given the paucity of available treatment in the second and third line settings, phase 1 studies will potentially provide an important opportunity for patients, particularly where there is a strong biological rationale. New agents on the horizon which might be relevant include inhibitors of the PI3K/ mTOR pathway which has been reported to show single agent activity in relapsed mesothelioma, and also inhibitors of programmed death 1.
Professor Dean Fennell
PhD FRCP
Chair of the National NCRI Mesothelioma Subgroup Chair of Thoracic Medical Oncology
University of Leicester & Leicester University Hospitals
Currently, despite the rising incidence of mesothelioma in the UK, there are
only very limited treatment options available on the NHS for patients.
Novel Agents for the Treatment
Over several years Professor Thomas Vogl and his team in Frankfurt have been treating patients with pleural mesothelioma with a technique called ‘Nonselective Transarterial
Chemoperfusion’. This is a new way of delivering cytotoxic chemotherapy to patients with pleural mesothelioma. It is an extension of similar techniques used in the treatment of cancers in other parts of the body, notably the liver. Techniques similar to that described in this article are in use in the NHS in the UK, but not for patients with mesothelioma. Professor Vogl’s technique has been the subject of interest in the UK, especially from patients with mesothelioma who, understandably, want to hear about all possible treatments. Doctors and nurses caring for people with mesothelioma have also been interested to hear more about this treatment. British doctors have had to be cautious about recommending treatment with nonselective transarterial chemoperfusion to patients because no full results for patients with
mesothelioma have been available until now.
Professor Vogl’s team have now presented results on 39 patients treated with transarterial chemoperfusion. The median survival time from first treatment was 17 months, with a mean progression-free survival time of 2.6 months (i.e. 79 days). Progression-free survival is a key measure in a trial of this type as it is sometimes used to determine the likely benefit of a treatment.
By comparison, the progression-free survival in the clinical trial of Pemetrexed and Cisplatin for previously untreated patients (published in the Journal of Clinical Oncology by Vogelzang, 2003) was 5.7 months.
An even closer comparison is with patients treated with Pemetrexed and Cisplatin as second-line chemotherapy (as in Vogl’s trial). According to the results, these patients had a median survival time of 15.3 months (Manegold, Annals of Oncology, 2005). And in the randomised ‘MARS’ trial conducted in the UK, the median survival for patients not treated with radical surgery (i.e. with intravenous chemotherapy only) was 19.5 months (Treasure, Lancet Oncology, 2011).
Professor Vogl and team say the following about transarterial chemoperfusion: ‘This procedure could be of benefit in the treatment of this tumour in stages when it is unresectable’ and, ‘that our study results will open up the horizon for more studies to be performed.’ Professor Vogl concludes that transarterial chemoperfusion may have the potential to yield positive results and response in the treatment of recurrent and/or unresectable pleural mesothelioma. What needs to be done is a randomised trial of transarterial chemoperfusion versus intravenous chemotherapy. Only a randomised trial can show if transarterial chemoperfusion offers any benefits to patients above and beyond what we can already do. The results presented in the recent article cannot confirm or deny such a benefit.
Consultant Medical Oncologist Barts and the London NHS Trust
Nonselective Transarterial Chemoperfusion: A Palliative Treatment for
Pleural Mesothelioma. By T Vogl, S Lindemayr, N Naguib, J Gurung, N
Nour-Eldin, S Zangos, E Mbalisike. Goethe University, Frankfurt, Germany
Research Article Review
Running a
Mesothelioma Service
at Guys & St Thomas’
NHS Trust
My name is Rachel Thomas and I
run the Mesothelioma Service at
Guy’s and St Thomas’ NHS Trust
(GSTT) along with my colleague
Sarah Compton.
Our service includes meeting all the newly diagnosed mesothelioma patients who attend GSTT for systemic treatments. We also work in partnership with the Thoracic Case Nurse Managers who care for all the mesothelioma patients who have undergone surgical procedures for mesothelioma. We also run a dynamic support group which is well attended, part of our activities as a group include: • Annual cake bake sales to raisemoney for GSTT Mesothelioma charity. • Organise group lunches to encourage new people to come along and meet the group in an informal setting. • Invite a varied range of professionals to
come and talk to the group.
• Have just informal meetings where the patients and carers are able to ask questions and share with each other their experiences.
Sarah and I also attend the Parliamentary Asbestos Sub-Committee group which provides an insight into the world of politics. This group meets on a 3 monthly basis and is attended by victim support groups, solicitor’s and lobby groups. It is a good meeting to find out about any changes to policy particularly around changes to compensation payments and the Government Lump Sum scheme. Currently we are working hard to organise the first GSTT Mesothelioma Study Day and have a really good programme of speakers lined up. This study day will be on 4th July so we will keep you updated on registration. We are also putting together a spreadsheet listing all the mesothelioma patients who have treatment at GSTT, their mesothelioma sub-type, treatment and survival. It is hoped that we can then use this data to look at doing an audit on survival. My job is wonderful and very rewarding!
Dr Jeremy Steele
To Run Mesothelioma UK
for 1 year £269,000 is required!
Mesothelioma UK Charitable Trust 1126083
Fundraising News
People are so very generous with their time to undertake organising events, putting on coffee mornings, standing out in the cold raising awareness, taking part in challenges or just supporting others and we are truly grateful because without YOU we could not survive.
So please keep up the fantastic work you do and we will be there to support you all the way because what we do makes a big difference to the lives of those who have been touched by mesothelioma and we will continue to realise our dream of having a Specialist Mesothelioma Nurse in every cancer network in the UK.
Fundraising & Marketing Manager Email: [email protected]
Well it’s the start of the New
Year and our fundraisers have
been busier than ever and I am
so delighted to say that through
the sheer hard work and support
of our Fab Fundraisers, our
Corporate Sponsors and all those
truly wonderful people that donate
to our cause we have again hit our
targets and will be able to support
the Resource Centre and meet our
objectives for another year..
Fundraising
Update
Jill Lemon
In this Issue:
• Fundraising Update
• Our Fab Fundraisers
• Action Mesothelioma Day
• Picture Board
Mesothelioma UK • Freephone 0800 169 2409 • www.mesothelioma.uk.com
Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website
What are our Fab
Fundraisers up to?
Yet again, it is an absolute pleasure to report back that the last three
months have been a hive of activity in the Charitable Trust’s fundraising
world, it never ceases to amaze me the innovative ideas people have to
raise funds and awareness for our cause and there is a lot to look forward
to in the next couple of months, see below for details as there may be a
fundraiser or event near you that you may like to support.
Putney Art Fair in Memory
of Christine Wright
- by Karen Morris
Christine Wright had many talents but the greatest was her ability to make friends and draw those friends together. We all felt a huge gap in our lives, and still do, after her untimely death from
mesothelioma on 12th October 2011. From the germ of an idea to raise money for Mesothelioma UK, an Art Fair was initiated by Cathy Whitrow. Initially, a small group of us formed a committee to set the project in motion, and Christine’s daughter Gemma and son Max, as well as many friends, joined forces. The event was held at The Thames Rowing Club on Putney Embankment in London on January 6th and 13th and we had the use of these magnificent premises free of charge, for which we extend our grateful thanks to the Club. Tasks were divided between us and the sense of teamwork was palpable. One group offered to provide tea and cakes which were a huge success. A local Music Quartet organised by Mary Sandbrook, who played the whole time and gathered together a selection of friends who played
at various times with her played selflessly for several hours on both Sundays and greatly added to the atmosphere. Cathy’s drive and hard work produced hundreds of works of freely donated artwork, as did the efforts of many other friends. We all delivered
hundreds of leaflets over a wide area. To our astonishment and delight, people, friends and relatives poured in for the Fair and we managed to take a grand total of £4,549.15. An anonymous donation of £6,555.25 brings the total to £11,104.30 for the Charity.
Charity Art Exhibition
in Memory of Ann
Smith at The Gravelly
Barn in Braughing
Gravelly Barn is a place where a group of artists organise exhibitions to promote their work together with other local artists. They combine their passion for art with fundraising events in support of Breakthrough Breast Cancer which is a charity very close to their hearts. Alongside this the group choose other charities to support and on this occasion Tricia Lilley, a member artist put forward the Charitable Trust as her chosen charity because her partner and a fellow artist Ann Smith, sadly in September passed away with mesothelioma.
The three day exhibition featured paintings, textiles, ceramics, jewellery, glass, hats, and Boris on the piano with festive refreshments and was
held over the weekend of 30th November, 1st and 2nd December, 10.30am-4.30pm and they raised a wonderful £700.00 This exhibition is to be the first of two events in memory of Ann, the next being in the New Year.
Natalie Atentyk,
My Dad’s Story
Like most people I had never heard of the word mesothelioma before, now it’s a word that will haunt me forever. In April 2011 our whole world was turned upside down when my Dear Dad Steven Rogers was diagnosed with mesothelioma at the age of 54. We had gone from having a normal everyday life with all the normal things that every family has to our whole world being turned upside down in an instant. It all started with a cough. Everybody gets a cough from time to time. However Dad’s cough turned out to be something life changing and devastating. My Dad had worked as an Electrician since the age of 16 and had worked in and amongst asbestos on many occasions. It had been many years since Dad had been in contact with asbestos but having worked as a Health and Safety Manager knew all too well the dangers and possible outcomes from being exposed. My Dad later told me that mesothelioma was the one word he didn’t want to hear when awaiting diagnosis but sadly that was the word that Dad received.
As most people reading this will be aware the prognosis for a patient diagnosed with mesothelioma isn’t great. Dad was advised that he could have 6 months or he could have 3 years, they just didn’t know. Dad went through 2 rounds of Chemotherapy and Radiotherapy both of which brought many side effects. But I strongly believe they gave Dad extra time. He lived 18 months past diagnosis and in those 18 months he fought hard and with dignity. During that time he managed to walk me down the aisle at my wedding and he also managed to meet his first grandchild, my daughter Ella. She was his “little chick” as he called her and she kept him fighting longer. Sadly Dad lost his battle on 30th September 2012 aged 55. Leaving behind my Mum aged 54 older sister Lisa aged 27, myself Natalie aged 24 and younger brother Alex aged 20. It’s impossible to express in words the void he has left in all our lives but his spirit and love will remain in our hearts forever.
I am running the Manchester 10K in May in memory of Dad and have been
overwhelmed by the support I have already received from people helping me to raise funds for Mesothelioma UK Charitable Trust. If I can make a difference in a small way then I believe I will make my Dad proud.
www.justgiving.com/Natalie-Atentyk
News Flash...New support group
for Mesothelioma patients and
families in the East Midlands
The Derbyshire Asbestos Support Team (DAST) and Mesothelioma UK will be organising 2 coffee mornings this year, to enable patients, carers and families to meet in a relaxed atmosphere to share information and experiences. There will be updates on campaigning issues and the work of the Derbyshire Asbestos Support Team as well as an update on the work of Mesothelioma UK.
Liz Darlison, Nurse Consultant, will be available for you to ask clinical questions both in an open forum and throughout the coffee morning. If you have any problems with your benefit entitlements DAST will also be available to answer your questions.
The first Coffee Morning is to be held on Wednesday 1st May 2013 in The Sir Richard Morris Room, Derby Cathedral Centre, 18 – 19 Iron Gate, Derby, DE1 3GP from 11.00 am – 12.30 pm. Please contact DAST on 01246 380415 if you would like to come along.
Fundraising campaign raises
£2,000.00 for Mesothelioma
Charitable Trust
Emma Costin and Rebecca Ryan of Simpson & Millar solicitors, were delighted to deliver a cheque for £2,086.50 which was raised by former clients who had made a claim for compensation from the Ministry of Justice Pleural Plaques Scheme which
closed in July 2012. This is an especially admirable fundraising effort involving donations from people with pleural plaques who themselves are clearly not in the best of health and their kindness and consideration is very much appreciated. The presentation took place in our fundraising office on 15th February and having met the team and learned about the work we do Simpson & Millar have decided to formally support the charity by becoming a corporate sponsor.
Liz Taylor ‘For Petes Sake Gig’
Liz organised a ‘For Pete’s Sake Benefit Gig & Music Sale’ on Saturday 23rd February 2013 at the Risinghurst Community Centre in Oxford in memory of Peter ‘Mr Chillout’ Galpin. Taking part in this gig were Maeve Bayton, Headington Hillbillies, Blues Rumour, The Wayriders and Special Guests.
A full account of the event will be available to read in our next newsletter.
Stephen Greenwood and his
‘Hawaii Five 0 Darts Night’
Stephen and friends organised a Darts evening with the legend they call Wayne “Hawaii 501” Mardle. Stephen said… “We had an excellent evening last night with Wayne before a large audience. Ten days ago I was worried that I would not have many people coming and could not believe how well we were supported and as a result of this we raised the sum of £1,380.00 which is absolutely fantastic”.
Emily and Toni Ferry
Toni and Emily have pledged to walk 20 miles from their Village of Brassington to Ashbourne in loving memory of their dear friend Vic Andrzejewski. They will be walking along the High Peak Trail and the adjoining Tissington Trail. The walk will be on 2nd March and they will be walking in neon fancy dress outfits, They will be calling at some of the pubs en-route to Ashbourne, so if you are out and about and fancy tagging along for a while or join them for a drink en-route you would be more than welcome or visit their giving page and support their cause.
www.justgiving.com/walking4Vic
Asbestos is dangerous, let’s do
something about it and get involved
Sam Stretton and her man Drew will be taking on a Beast of a challenge…
The Beast is an Extreme Cross Country Run on the 24th February 2013 which takes place at Aylesford Equine X Country Course, Aylesford Farm, Shroby, Melton Mowbray, Leicestershire. They will be tackling 40ish jumps, 2 water splashes, squeezing under camouflage netting, lung busting hills including the famous Nessie Hill which they will stagger up and probably roll down and to finish it all off with 2 water wades... they must be absolutely bonkers... but why? Because Sam lost her lovely mum Glenda to mesothelioma and ever since the family was told of Glenda’s diagnosis they have every year done something special to help support the charity... so we are sending our good luck wishes to both Sam & Drew and hope you have a wonderful time and enjoy this fantastic challenge!!
If you would like to support them please visit their just giving page:
http://www.justgiving.com/SamStretton
ACTION MESOTHELIOMA DAY 2013
Action Mesothelioma Day will be taking place on 5th July this year and if you are organising or taking part in an event to
support this day please let us know the details and we will post the information on the website, contact us on
0800 169 2409 or email [email protected]. The Leicester Action Mesothelioma Day will again be held
at the Leicester Cathedral. Mesothelioma UK will be hosting the event along with the Derbyshire Asbestos Support
Team and if you would like a loved one’s name adding to the in memory scroll and/or would like to attend on the day
please get in touch with Joanne Gordon on 01246 380415.
DBT’s MoneyRun...David
Barton-Taylor is running
in the Cambridge Half
Marathon on 1st March
2013; Support his cause
and visit his Giving Page
http://www.justgiving.
com/David-Barton-Taylor
Simon Hewitt did run
the Cornish Marathon
and raised a wonderful
£237.50, absolutely
fantastic...
Team QMSA - John Martin, Andy Flook & Chris Kulski
took part in the men’s survival of the fittest in London on 17th November to help raise money and to provide help and support for sufferers and their families. This wonderful trio raised
£906.25 well done guys!
Pamela Hamshaw
Thank you so much Pam for
your continued support. We
really do appreciate come
rain or shine you braving the
weather to raise awareness
about the dangers of
asbestos and getting our
name out there! Thanks Pam
you are a shining star.
Holly Hatcher will be running the Brighton Half Marathon
on 14th April 2013...I’m running in memory of my father, a fantastic dad and husband, who will forever be
missed. If you would like to support my cause please visit http://www.justgiving.com/
Holly-Hatcher
Nicola Todd w
ill be running
in the Bath H
alf Marathon
on the 3rd M
arch 2013 in
support of he
r lovely Dad w
ho
has recently b
een diagnosed
with mesoth
elioma. Visit h
er
Giving Page h
ttp://www.
justgiving.com
/Nicola-Todd3
if you would l
ike to support
her challenge
!
Samantha Bl
ackman and
her Auntie w
ill be Skydivin
g
on the 30th M
arch 2013
in memory of t
heir lovely
Grandad and Da
d, whose
birthday it wo
uld be on that
day. To suppor
t them visit
http://www.
justgiving.
com/Samant
ha-Blackman
1
Stephanie Canfield will be taking part in the Brighton Half Marathon on 14th April 2013, In 2008 I witnessed a family
member, Brian Jones, taken from us by Mesothelioma and
how it significantly affected the whole family. http://www.justgiving.com/
Stephanie-Canfield
Laura Edwards will be
running in the London
Marathon on 21st
April 2013.
Claire McGechie and Adam
Shepherd, Climbed Snowden
on 5th November 2012…
Claire and Adam braved
the elements and climbed
Snowden in memory of Claire’s
lovely Dad, who they sadly
lost to mesothelioma. Claire
and Adam raised £637.50
which is just fantastic!!
Kerry Ann Shu
el and
Trevor Buckley w
ill be
running in the R
eading
Half Marathon o
n 17th
March 2013 i
n memory
of Stevie Sm
illie. To
donate visit h
ttp://www.
justgiving.com
/stevie-smillie-mesoth
elioma
Richard Harris wil
l be running for his Dad in the B
righton Half Marathon on 14
th April 2013. Dad was dia
gnosed with Mesothelioma in J
anuary. Any donations may h
elp the increasing number o
f people being diagnosed w
ith it. http://www.justg
iving.com/ Richard-Harris-Co
ve
Myrtle Lawrence and
the Principal of the
First Class Dance Studio,
Duncan Neville Smart
pictured have very kindly
been raising funds and
awareness in Wales about
the dangers of asbestos
throughout the last year.
Amanda Mill
er, Sarah
White and St
ephen Barnes
will be taking p
art in the
Trans Peninne C
hallenge
100km on 22
nd June
2013, if you wo
uld like to
take part in t
his challenge
see the websi
details.
te for more
Event? 3 P
eaks Cha
llenge!
When? 22
nd June 2013!
Who? Lau
ra Higgin
bottom,
Dan & Dav
e Hunt, M
at
Winterbo
ttom, Dar
ren Pope,
Dave Phe
asey & Jam
ie Millard
.
Why? In me
mory of
Gold Sponsor
Silver Plus Sponsors
Silver Sponsors
Bronze Sponsors
Event and Service
Sponsors -
Specialist Nursing
Post
With grateful thanks to our sponsors for 2012
The Mesothelioma UK Charitable Trust exists to raise funds to
support the services provided by Mesothelioma UK and any sponsorship, grants or donations made to
the charity support this.
To run Mesothelioma UK for 1 year £269,000 is required.
Supporting Educational Events
Irwin Mitchell Solicitors have kindly awarded Mesothelioma UK A £500.00 Educational Grant towards costs to attend the International Mesothelioma Interest Group Conference 2012 in Boston, USA. Thompsons Solicitors have kindly awarded Mesothelioma UK a £500.00 Educational Grant towards costs to attend the International Mesothelioma Interest Group Conference 2012 in Boston, USA. John Pickering & Partners have kindly awarded Mesothelioma UK a £500.00 Educational Grant towards
costs to attend the International Mesothelioma Interest Group Conference 2012 in Boston, USA. John Pickering & Partners on behalf of LCNS Lorraine Creech has kindly donated £250.00 from a recent study day where she was an invited speaker.
Details of all sponsorship, donations, fundraising and successful grant applications are posted on
our website at
www.mesothelioma.uk.com
Shield Environmental Services £300.00 donation in support of Mesothelioma UK.
Building Energy Control Solutions LTD have kindly given their pledge of support and will
