Living With Mesothelioma -My Diary The Report from Lind Alliance has been emailed to me to share with you all


Its been such a cold day today we are going to have a colder night –so frosty

The report of our work shop day in London with Lind Alliance so I will make this my blog today as it really is interesting reading and I loved playing such a huge part with Ray that day..

I was very proud to be asked to attend this meeting which I blogged click on the link and you can see me in the photo http://www.psp.nihr.ac.uk/mesothelioma/results

I had the most enjoyable day with these people from the medical world.

PSP Results

The Mesothelioma PSP final workshop took place on 10 November 2014, to bring together patients, carers and healthcare professionals to set priorities for mesothelioma research.  By the end of the day, 30 participants had successfully shortlisted 30 questions and agreed the final top 10.  Another three questions were noted as being important to highlight.   Half of the group were patients and carers and their representatives, the other half were health professionals.

(Im sitting down on the right )

The Mesothelioma survey

The discussions were lively and passionate, incorporating many viewpoints and experiences. The collaboration on the day and throughout the year-long process brings home the importance of the agreed research priorities to the mesothelioma community.

We hope that this work will help researchers to find answers to the questions which will make the most difference to those affected by the disease.

I thought Monday’s workshop was brilliant! The opportunity to discuss the whole subject of mesothelioma in one meeting, with such a pre-eminent cross section of UK experts and on an equal footing was exhilarating. I must admit I had some misgivings about the outcome at the beginning but in the end thought it was exactly right.

Graham Sherlock-Brown, patient on the Mesothelioma PSP Steering Group

Just reflecting on working in one guise or another with patients with a mesothelioma diagnosis since the early 90’s it would have been almost inconceivable back then to dare imagine a room full of patients/carers/clinicians sharing the stage and having an equal say about such important issues. It was a massive privilege to be included in the process and be able to offer some comment and opinion. The facilitation of the more vocal clinicians and carers was exceptional and ensured that everyone could safely have their voice heard. It truly was an amazing experience and I am looking forward to the future of relevant trials in this previously desolate landscape.

Naomi Horne, Macmillan Lead Lung Cancer Nurse/Mesothelioma UK Nurse

An extraordinarily interesting project.  I’ve never been to an event with such a large contribution from patients and carers.  Their presence made the day special and unique in my experience.

Jeremy Steele, Consultant Medical Oncologist, St Bartholomew’s Hospital, London

(Ray is in the second Row here )

The Mesothelioma survey

Top priorities for research

The top 10 priorities for research into the diagnosis, treatment and care of mesothelioma are:

  1. Does boosting the immune system (using new agents such as PD-1 or PD-L1) improve response and survival rates for mesothelioma patients?
  2. Can individualised chemotherapy be given to mesothelioma patients based on predictive factors (e.g. the subtype of mesothelioma (epithelioid, sarcomatoid, or mixed), or thymidine synthase inhibitor status (the protein that drugs like pemetrexed act against), etc)?
  3. What is the best way to monitor patients with diffuse pleural thickening and a negative biopsy who are considered to have a high risk of developing mesothelioma (e.g. repeat biopsies, imaging, etc)?
  4. In mesothelioma patients, what is the best second line treatment (i.e. what chemotherapy drugs should be used if a cancer has recurred following first line chemotherapy, usually with cisplatin and pemetrexed)?
  5. Which is the most effective current treatment for ascites (excessive accumulation of fluid in the abdominal cavity) (e.g. denver shunt, pleurex catheter, etc) in patients with peritoneal mesothelioma?
  6. What are the relative benefits of immediate standard chemotherapy compared to a watch and wait policy for mesothelioma patients?
  7. For mesothelioma patients, what is the best follow-up strategy post-treatment, to identify and treat emerging side effects and other problems?
  8. In mesothelioma, is there a role for intrapleural immunostimmulants (a drug designed to stimulate an anti-cancer immune response, such as corynebacterium parvum extract) in addition to any other treatment?
  9. Does an annual chest x-ray and/or CT scan and medical examination in high-risk occupations (e.g. carpenters, plumbers, electricians, shipyard workers) lead to earlier diagnosis of mesothelioma?
  10. What, if any, are the benefits of pleurectomy (pleurectomy/decortication) compared to no surgery, and which mesothelioma patients might benefit?

In addition to the top 10, the workshop participants requested that the following three questions also receive a special mention for their importance:

  1. Can PET-CT scans (which produce 3D images of the inside of the body) help to diagnose mesothelioma (as well as aiding the assessment of response to treatment)?
  2. How can the levels of mesothelin (a protein present in mesothelioma cells that can be measured in the blood) best be incorporated in the diagnosis, response and progression of mesothelioma?
  3. What is the best current treatment for breathlessness in mesothelioma patients (e.g. exercise, handheld fans, etc)?

The agreed order of the remaining questions discussed at the workshop was:

  1. Is giving a course of chemotherapy to mesothelioma patients before or after surgery beneficial?
  2. What is the best current method of managing mesothelioma patients with chronic recurrent pleural effusions (e.g. tunnelled indwelling drain vs pleurodesis and repeated pleural tap)?
  3. Should treatment for mesothelioma, if the patient has no symptoms, be given immediately or delayed?
  4. Is giving a course of radiotherapy to mesothelioma patients (especially new techniques such as Intensity Modulated Radiotherapy) before or after surgery beneficial?
  5. Is giving a course of radiotherapy to mesothelioma patients (especially new techniques such as Intensity Modulated Radiotherapy) before or after chemotherapy beneficial?
  6. Would early referral to palliative care be beneficial for mesothelioma patients?
  7. What is the value of weekly telephone support for mesothelioma patients during chemotherapy in reducing hospital admissions, side effects and anxiety?
  8. What is the current best method (e.g. contrast enhanced MRI vs PET) to accurately assess disease progression in mesothelioma patients?
  9. Can rehabilitation be used to improve long term chronic side effects in mesothelioma patients (especially following surgery) – e.g. the use of a comprehensive cancer rehabilitation team of health care professionals?
  10. Is there an overall benefit for standard chemotherapy in terms of QALYS (Quality Adjusted Life Years, a measurement that combines survival and quality of life) compared to supportive care alone, for mesothelioma patients?
  11. Should radiotherapy be given to mesothelioma patients at the incision site (as a result of surgery or thoracoscopy) to stop cancer cells spreading?
  12. What, if any, are the benefits of palliative surgery (partial pleurectomy / surgical debulking) for mesothelioma patients?
  13. Should interventions (e.g. cordotomy or radiotherapy) be used to control severe pain after surgical interventions for mesothelioma such as biopsy, VATS, pleurodesis, etc?
  14. What is the best current treatment for fatigue in mesothelioma patients (e.g. drug interventions)?
  15. is the best way to monitor patients with pleural plaques (e.g. CT scan) for development of mesothelioma?
  16. In mesothelioma patients, what is the best current treatment for sweating (e.g. Cox2 inhibitors)?
  17. What is the best treatment to alleviate mucus in mesothelioma patients (e.g. steam inhalation, carbocisteine, physiotherapy, etc)?

Outside of this top 30, the remaining verified uncertainties discovered were (in no order of priority):

  • Are cox inhibitors (a form of non-steroidal anti-inflammatory drugs) effective in mesothelioma, when added to any other treatment?
  • Are biphosphonates (which are usually used to prevent or slow down bone damage, but may inhibit the growth of mesothelioma cells) effective in mesothelioma when added to any other treatment?
  • Can a brief psychological intervention help with body image and sexual concerns?
  • Can a brief psychological intervention help with body image and sexual concerns?
  • Does the addition of ADI-PEG20 (a novel protein that breaks down an amino acid (arginine) that cancer cells need to survive and grow) to standard chemotherapy in mesothelioma patients improve overall survival?
  • Does metformin (an oral anti-diabetic drug which may act directly on cancer cells) delay progression or recurrence in mesothelioma?
  • In localised areas of disease, is the application of extreme cold to destroy cancer cells (cryotherapy or cryoablation) more effective than radiotherapy?
  • Is there a role for less aggressive first line chemotherapy (such as monotherapy e.g. oral vinorelbine) in patients with poor fitness levels?
  • Is it beneficial to screen psychological conditions, and give anti-depressants to patients with depression?
  • Is giving six cycles of chemotherapy more effective than four?
  • Is there a role for maintenance chemotherapy (with pemetrexed, or oral vinorelbine)?
  • Is chemo-embolization (delivering the drugs intravenously to the vicinity of the tumour) a more effective way of giving chemotherapy than the standard intravenous method?
  • Is chemoperfusion (rinsing the abdominal cavity with chemotherapy) more effective than standard chemotherapy in patients with peritoneal mesothelioma?
  • Is brentuximab vendotin (a drug which acts against CD30 antigen, a protein given off by cancer cells) effective in patients with mesothelioma?
  • Is hyperthermia (increasing body temperature to damage cancer cells) of value in patients with peritoneal mesothelioma?
  • Is acupuncture effective in relieving and/or controlling pain?
  • Is laser-induced thermal therapy effective in patients with mesothelioma?
  • Is photodynamic therapy (activating photosensitive drugs using light energy) effective in mesothelioma?
  • Is hyperthermia (increasing body temperature to damage cancer cells) plus standard chemotherapy effective in mesothelioma?
  • Is there a benefit in reducing the chemotherapy doses (by say 10% or 20%) in less fit patients?
  • What is the value of cyto-reductive surgery (removing some of the tumour) for patients with peritoneal disease?
  • What is the effect of vitamin supplementation on outcomes (infections, side effects, etc)?
  • What are the relative benefits of other established chemotherapy regimens compared to the standard drugs (cisplatin, or carboplatin, and pemetrexed)?
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