DERBYSHIRE ASBESTOS SUPPORT TEAM (DAST) DAST, 34 Glumangate, Telephone 01246 380415 Mesothelioma UK Conference Chesterfield, S40 1TX. Edition. Edited by Joanne Gordon Mesothelioma UK Conference On Saturday 5 th October 2013 Natalie and I attended Mesothelioma UK s Patient and Carer Day. It was a really helpful and informative day and it was nice to see so many patients and carers from the East Midlands. Caroline Roberts alongside their treatment. But there is a lot more to radiology. Radiology is used to understand and determine diagnosis, for example, is the disease benign or malignant. It is used to help determine treatment eg for surgeons to establish if the tumour is operable and then after treatment to determine the success of treatment whether that be surgery or chemotherapy. Jeremy Steele - Oncology trials update The day started with a short speech by Caroline Roberts, who is a Blue Badge tourist guide. Her talk was about What s Leicester got to offer other than cheese. At the end of the day Caroline was organising a short walk around the city for any patients and carers who wanted to join her. Amrita Bajaj Consultant Radiologist Next to speak was Amrita Bajaj Consultant Radiologist Amrita realises that most people see radiology as something running Jeremy Steele, standing in for Professor Dean Fennell, was next to speak. He spoke about Professor Fennell s work in understanding the biology of mesothelioma. Surgery Jeremy Steele discussed the difficulties of surgery in mesothelioma, due to the shape and the way the mesothelioma tumour develops, which is different from other tumours. Most cancers are more spherical but mesothelioma grows like moss around the lungs, making surgical procedures difficult. Occasionally some tumour is left behind after surgery. 1
Understanding cancer There are 3 types of radiotherapy Prophylactic radiotherapy Post-operative radiotherapy Jeremy Steele discussed the science of cancer. Cancer is our natural body cells that are growing out of control and in the wrong places. The challenge is to try and stop the cancer cells growing. Immunotherapy may be a way forward. We know that our immune system fights germs including cancer. However, our cancer killing T cells are not always good enough. Immunotherapy will be about stimulating the immune system to fight established cancer cells. Apoptosis is an important word in cancer treatment. Apoptosis is the procedure by which a human cell dies at the end of its life and then is recycled by the body to produce a healthy cell. Cancer cells do not follow the procedure of apoptosis. Important cancer research is about finding a way for cancer cells to die and become involved in the process of apoptosis. Neil Bayman Consultant Clinical Oncologist Radiotherapy Neil s brief was to discuss if there is a role for radiotherapy in the treatment of mesothelioma. Radiotherapy has the ability to kill cancer cells. The challenge is to get as much radiotherapy as possible to the cancer without damaging the healthy cells around it. Palliative radiotherapy Prophylactic Radiotherapy is quite specific to mesothelioma. It involves giving radiotherapy to the biopsy site to reduce the risks of nodules appearing along the biopsy site. There have not been any trials to determine the effectiveness of this type of radiotherapy. Two randomised trials are now recruiting quite well. The PIT trial is open throughout the UK mainly in the North and Midlands, whilst the SMART trial is open in Bristol recruiting mainly from hospitals in the South and West. The trials will look at a number of factors including length of time from biopsy to growth of nodules, locality of the nodules, possible side effects and problems caused by the metastasis. It is hoped that the results from trials will standardise treatment throughout the UK. The PIT trial opened in 2012 and is currently exceeding recruitment targets. Definitive Radiotherapy It is very difficult to use radiotherapy to treat mesothelioma because radiotherapy will be needed to treat a big area around the lungs and it is very difficult not to damage surrounding cells. Furthermore, the doses needed would be too high. Post-Operative Radiotherapy has been used to treat areas of cancer left behind after surgery. However, it is still quite controversial; there is little evidence to prove that it helps. In one 2
trial half the patients were too ill to receive radiotherapy after surgery. Therefore, it is not routinely offered. Proton therapy is the next step. It is only experimental at present, but Proton therapy would target the cancer and miss the surrounding cells. Proton trials are not likely to happen until 2020 2025. Palliative Radiotherapy is used routinely. Radiotherapy helps to reduce pain. At present 10 sessions of radiotherapy are given over 2 weeks. After 2 3 weeks pain subsides. A reduction in pain was reported by 50 60% of patients. Again it is not clearly known how effective this radiotherapy is. Trials in palliative radiotherapy are open in Glasgow, Edinburgh and Sheffield. The June Hancock Mesothelioma Research Fund has given money to determine the best dosage for palliative radiotherapy. Jeremy Steele then returned to the platform to give a trials update. Jeremy explained that the goal is to personalise treatment, one drug does not suit everyone. There are a number of trials recruiting in the UK. Meso 2 trial all patients will receive platinum and alimta plus half will receive the new drug Ganetespib to try and block the cancer growth. The trial is at Leicester only currently but will expand to other centres soon. Command trial another growth inhibitor factor trial. The trial will look at inhibiting protein cells FAK which the cancer needs to grow. The trial is open in several UK centres. VIM trial -second line chemotherapy trial. Patients will be randomised to receive Vinoralbine or best supportive care. Contact Mesothelioma UK for information about trials 0800 1692409 Update about Mesothelioma UK Survey Mesothelioma UK have undertaken a National Mesothelioma Patient Experience survey. This survey will help to draw up priorities. One of the big issues to address is GP knowledge of mesothelioma and exposure to asbestos. Lots of GP s never ask patients if they have ever been exposed to asbestos. Rarer forms of Mesothelioma Another priority for Mesothelioma UK is to support patients with Peritoneal Mesothelioma - a rarer form of mesothelioma. Research The James Lind Alliance will be carrying out a major project to determine the mesothelioma research priorities for funding. Patients and carers have their say about the priorities contact Mesothelioma UK to find out how you can get involved. 3
Other priorities Other priorities for Mesothelioma UK include recruiting a Benefits Advisor and co-ordinating events for Action Mesothelioma Day. Jill Lemon continued with a fundraising update and thanking all their supporters. One of the overall aims for Mesothelioma UK is to have a Specialist Mesothelioma Nurse in all areas. Case studies over to patients and carers The next part of the conference was left to patients, carers and families to share their stories. Those who spoke provided inspiration and hope for others attending. First to speak was Graham Sherlock- Brown, who was diagnosed with mesothelioma 11 years ago, followed by William Vernon who will have been diagnosed with mesothelioma for 15 years by the end of 2013. Both stated that it is important to keep mentally and physically fit and they have both remained active and led their lives as normal as possible. One gentleman speaking at the conference was a GP who has been living with mesothelioma for several years, having been diagnosed at the age of 47. He told others not to be disheartened as there is hope with this disease. He too cycles and goes to the gym. is the first person to be recruited onto the Meso2 trial with Prof Fennell. A number of widows and family members spoke about the fund raising they are undertaking as well as awareness raising to ensure that the general public know about mesothelioma in the same way as they are aware of other cancers such as breast cancer. Introduction to oral histories Michelle Winslow This is a fantastic initiative by Macmillan Cancer Support to record life stories and memories with patients. Michelle herself is based in Palliative Care in Sheffield. There are also other pilot sites in Leeds, Manchester and Nottingham. The project involves an experienced oral historian sitting with patients to make a voice recording of their experiences and life histories. Michelle stated It is so important to record voices, which will provide a record for family and friends. Photos are also taken. The sessions involve talking about anything that is important to the patient life stories not a narrative about the illness. Just the fact that somebody is listening to you for an hour, about you; how unusual. Families also get great comfort from it. Alistair Ault who was diagnosed with mesothelioma in 2011 also spoke. He 4
Michelle hopes that the service in Sheffield will remain and, in fact, be extended across the country. Contact Michelle on m.winslow@sheffield.ac.uk Dr Luke Feathers Consultant in Palliative Medicine LOROS had drawn up a case study of Mr Jones to explain how the palliative care team may tackle a patient s issues. Firstly Mr Jones was breathless - how can this be improved? Some examples included: Investigating the cause of his breathing difficulties; had fluid built up around his lungs? Is there an infection? Garden at LOROS Palliative care is about treating the symptoms as well as the condition. Who may be involved with palliative care? In the Hospital - Lung cancer nurse or - Mesothelioma nurse specialist - Doctors - Social workers - Physiotherapist - Chaplain At home - GP - District nurse - Occupational therapist Specialist Teams - Hospital palliative care team - Hospice team - Community palliative care team (Macmillan or hospice nurses) Dr Feathers explained that palliative care is about looking at the whole person, including any worries that a patient may have which may include worry for family and friends. Dr Luke Intervention may include: Learning breathing techniques eg square breathing or using a hand held fan Square breathing is a simple technique whereby the patient focuses on a square and follows the square around breathing in at the corners and releasing the breath as the patient follows the length of the square. This helps to regulate breathing, Dr Feathers suggested practising it so it becomes a useful tool when most needed. There are also some drug treatments to help with breathing and anxiety. Mr Jones was experiencing some pain, which is common; it may be due to surgery or following chemotherapy, there may be some nerve damage and, therefore, the patient may experience some burning in the feet and fingers. The medical profession use the WHO pain ladder to start with low doses of pain relief and then move up the ladder dependent upon the levels of pain. 5
Mr Jones had worries about the future. Anxiety had built up because he had been admitted at weekends and staff didn t know him. Therefore, the hospice drew up an Emergency Care Plan which included information about his illness to new staff. It informed the staff that if he was unable to make any decisions, he wanted his wife to do this on his behalf. The hospice also helped with psychological and spiritual care to give his life meaning and hope and looked at drawing up realistic goals. Mesothelioma UK Trustee Solicitors Current procedures Mesothelioma UK Trustee Solicitors explained the civil litigation procedures. Ruth Davies (Pickerings) gave a case study of what happens in an uncomplicated mesothelioma case. The important thing is that the Solicitor can issue court proceedings early. Master Whitaker has established a dedicated court for dealing with such cases. He has turned the burden of proof around. He will determine if the employer has a defence to the case. If the employer does not have a justifiable defence, the victim will be awarded 50,000 in interim damages. A date is then given for a hearing to discuss quantum. In Ruth s example, in an uncomplicated case, the case was settled within 12 weeks. New proposals Then Alida Coates (Irwin Mitchell) explained that the Association of Business Insurers believe the process is not working well. The Ministry of Justice have drawn up new proposals. However, these proposals are insurer led and the Government have accepted them. There is currently a protocol which, according to the claimant Solicitors, is working. Ruth settled her case study within 12 weeks. Taking the same case study what would happen under the new procedure? Under the new process, claimants will have to present all the evidence in their case in advance and the insurer will then decide whether to make an offer. Only thereafter can court proceedings be started. The costs will be fixed. New process - in the first instance, a letter of intimation will be sent but no investigations will begin. (In Ruth s example she sent a letter of claim in the first few weeks of being contacted by her client. The insurer then started to make investigations). After the letter of intimation a letter of claim will be sent. It now has to include 11 documents which must be supplied with the letter of claim, including the HMRC schedule which can take several weeks before it is received. It may be that the Solicitor cannot send all documents for 2 3 months. The insurer then has 12 weeks to determine if they accept liability. By week 12 in Ruth s example the case was settled. Under the new proposals, only after week 24 can court proceedings be issued. The new proposals will lead to delay as 6
quantum needs to be assessed at the same time as liability; currently that does not happen. Master Whitaker s court is far more efficient and should be rolled out. Claimant Solicitors are responding to a consultation document from the Government on the new procedures, but the conclusion is that the new proposals will have an adverse effect by creating delays. Furthermore, we can add to that by stating that unless defendants/insurers are given the stick of civil litigation it is unlikely they will make a reasonable settlement offer. TOP TIPS Liz Darlison 1. Knowledge is power - Seek out trustworthy sources of information such as the Mesothelioma UK website or get on the phone to Mesothelioma UK. - Learn as much as you can about mesothelioma - Find out about your disease and its treatment some patients may not want to know but have someone who goes through the information for you - Be aware of what you are entitled to - have a key worker someone who is responsible for your holistic needs assessment - The Gold Standard Framework check if your GP has in place the system whereby if you contact the surgery, it will alert them to make an appointment as quickly as possible. - Every cancer patient is entitled to free prescriptions 2. Develop a team in your team should be your: - Key worker - Identify who is your Consultant - GP:see your GP regularly so the GP can keep abreast of how you are managing the disease - Buddy / spokesperson this could be a partner / son or daughter or friend 3. Communication - Keep your GP informed - If you have a problem at the hospital contact your key worker - Keep your own information such as a diary - Use a range of technology to communicate; consider using email or text - Don t wait for an appointment if you have a problem and need an urgent appointment, ring for one 4. Access expertise - If you want to see the Consultant but only see the Registrar say you want to see your treating Consultant - You are entitled to a second opinion - Access clinical trials go to the centre of expertise. Contact Mesothelioma UK for up to date information on trials 0800 1692409 - Access early palliative care options 7
5. Talk and Network this could be via: 6. Exercise Mesothelioma UK have pedometers 7. Change any ill health changes your life consider new ideas - Group support - Social networking - Blogs 8. Hope is absolutely vital stories inspire and give hope. Seek out hope. Seek out anyone who will build you up. 9. Emotional self consider your emotional self. If you are not on top mentally you can t capitalise on your treatment, if you are struggling emotionally get help. Consider a holiday or group support. 10. Live - Draw up a bucket list, travel don t write off anything you wanted to do. Some people find developing a routine helps. You may also want to take treatment breaks, PLANNING is crucial. DAST RESOURCES Please don t forget DAST has hand held fans which we will post out to you free of charge. We also have Julie Robinson s Move it or Lose it DVD s which means anyone can undertake exercise, no matter how immobile they may be. Also Julie will be attending our next DAST Meeting at the Spot in Derby. DVDs are also free of charge. We also have a range of Macmillan Cancer Support information about exercise and healthy eating. Macmillan have a range of information including cookery books. For more information contact DAST. We also have information on travel insurance. Please contact DAST on 01246 380415. 8