Mesothelioma Patient and Carers Day 2013

You will probably not be surprised to hear that our particular interest in last Saturday's conference was the update on clinical trials, the talk about the role of radiotherapy in treating mesothelioma and case studies of symptom control.  

Perhaps selfishly, we were hoping to hear good news for meso warriors and bloggers like Steve, Mavis, Lou, Tess and Jan who have far outlived the "median" survival rate, already have two or more chemo regimes (and in some cases, major surgical interventions) under their belts and are looking for ways forward from here on in.  

I have to say, there was not much to get the pulse racing from the speakers in that respect.  It was the longer term survivors who got up and spoke at the conference that got the heart thumping.  People like Graham Sherlock-Brown (diagnosed in 2002 and still going strong); William Burleigh (Burley?) who will have survived 15 years post-diagnosis by the end of this year; Alastair who was diagnosed in 2008 and Chris, a 9 year survivor, who provided living proof not to give too much weight to survival rate statistics.  Not forgetting Steve, who stood up to give his message of hope!

So much for the overview....here are some random things that various speakers highlighted which caught my attention

Amrita Bajaj : Scans and X-rays in mesothelioma
Although considered a rare cancer, more people die from mesothelioma each year than as a result of cervical cancer, melanoma and endometrial cancer...all of which have a much higher public profile.  

Malignant mesothelioma is distinguished from benign disease because it

• surrounds the whole lung with a "rind" which can include nodules
• has pleural thickening greater than 1 cm
• involves activity in the mediastinal area (the central part of the chest between the lungs)

MRI scans have a higher sensitivity when it comes to identifying chest wall invasion.

PET scans show up "hot spots" of active disease.

Even so, it is still very difficult to "stage" mesothelioma i.e. establish how far the disease has spread and therefore what treatment is appropriate for the individual.

I found it rather difficult to follow this talk mainly because of the speed of delivery, especially towards the end when Amrita was running out of time and skipped rapidly through slides including several which looked potentially interesting from our point of view.  Amrita is clearly very knowledgeable and experienced in this area of expertise, but a bit more thought about the audience's needs and expectations might have resulted in a more targeted and succinct presentation.

Jeremy Steele: Oncology Trials Update

This talk was meant to be delivered by Professor Dean Fennel, University of Leicester who was unable to attend so Jeremy Steele spoke instead. There was a mix up in the slides which appeared to put JS in a bit of a pickle.  As a result, the first part of the talk didn't cover upcoming clinical trials, just went over why the disease is so difficult to treat with surgery and radiotherapy due to the way the cancer grows all round the lung and its proximity to vital organs and major blood vessels which makes "stripping out" very risky.  

More interesting from our point of view was how researchers are now looking at different ways of using chemotherapy to combat the disease by

• blocking cell growth (ie stopping the cancer growing out of control) using blockers such as MTOR/P13K
• using FAK inhibitors to target the loss of the NF2 protein Merlin which tells cells to switch off, stop growing and kill themselves
• exploring how genetically modified T-cells can be used to address the immune system's failure to recognise and kill cancer cells
• starving cancer cells of the key nutrient they need to grow, but leaving healthy cells alone (active substance L-Asparaginase)

After lunch, the slide problem had been sorted out and we were told a bit more about the clinical trials associated with the research outlined above:

• Cancer Research UK funded MESO 2 trial based in Leicester which opened in late August and is due to close at the end of January 2015.  It involves the use of ganetespib with pemetrexed and cisplatin. Ganetespib is a type of biological therapy which stops the signals that cells use to grow and divide.  This trial is only for those who have not previously been treated.  More details here (will open in new window) 
• COMMAND (Control of Mesothelioma and MAiNtenance Defactinib).  Defactinib is a FAK inhibitor which disrupts communication between cells to prevent mesothelioma cells from migrating and forming new tumours, thereby preventing metastasis and helping keep the cancer under control.  The trial is being lead by Leicester but will be rolled out worldwide, including other bases in the UK.  More details here.  This trial is only for people with one prior chemo regime consisting of four cycles of pemetrexed and cisplatin or carboplatin and documentation to confirm an ongoing response to this treatment
• VIM Phase II trial of vinorelbine as second-line therapy for people with mesothelioma.  Vinorelbine is an alkaloid which stops cancer cells dividing and consequently blocks the growth of the cancer. You can find out more about the trial here. The results from this trial will also help those whose cancer is due to genetic susceptibility.  The BRCA-1 gene produces proteins which suppress tumours.  If the gene is harmfully mutated, it cannot produce the proteins needed to carry out this vital role. There is a close relationship between the effectiveness of vinorelbine in inducing cell death (apoptosis) and the expression of proteins by the BRCA-1 gene.  This research will help evaluate the BRCA1 gene as a predictive biomarker for mesothelioma which in future will help doctors produce a personalised cancer care plan for individual patients

Neil Bayman: The role of radiotherapy in mesothelioma

Radiotherapy is used in three ways to treat mesothelioma

• prophylactic - to sterilize the tracts/ports where drains have been inserted into the chest and thereby reduce the chance of mesothelioma seeding into these areas. This procedure was based on a small trial in France and is currently given routinely in the UK.  However, there are some doubts now about whether it is worth doing, given the small size of the original trial sample. Two new trails are currently underway in the UK to assess the effectiveness of the procedure:  the PIT trial (more details here) and the SMART trial (more details here)  Steve had this procedure after pleurodesis and suffered no nasty side effects (read the blog posts in July 2009 if you want to know more).
• Post operative or adjuvant radiotherapy - usually carried out after surgery.    However, it rarely happens these days as the MARS trial (a pilot study which looked at the effectiveness of the EPP operation in which the affected lung, diaphragm and heart covering are removed) found that people who had the operation did not live any longer than those who didn't (the opposite in fact). Proton beam therapy is better at sparing normal tissue and targeting cancer cells and may be helpful in future for those diagnosed early, without metastasis
• Palliative radiotherapy - can help reduce pain (50-60% patients report an improvement). A new trial (SYSTEMS II) is proposed to help determine the optimum doseage
• CyberKnife was mentioned in response to a question - this is a very targeted beam which can be used to treat very small, well defined cancers. Neil did not consider it helpful for mesothelioma patients because of the way the cancer develops in sheets around the inner pleura lining the lung.  I'm still unclear why it cannot be used to target well-defined nodules of meso in the pleura, lines which can develop along operation tracts or "fingers" of meso which can grow into the chest wall, through the rib cage...
• Cryoablation - one member of the audience tried to ask a question about this form of treatment but referred to it as cryogenics.  The panel did not seem to know much about it, even though many of us in the audience had read about Jan Eggerton's experience of this treatment in the States....Jan, perhaps you should enlighten JS?

Mesothelioma UK:  Liz Darlison

Liz encouraged everyone to get involved with the NIHR to help ensure that clinical research studies reflect patients needs and priorities.  More details here

It was also good to see Meso UK's fundraisers get the recognition they deserve in a short but moving slide presentation! 

Luke Feathers: Symptom Control

Using an anonymous case study, Luke talked through the issues facing mesothelioma patients and suggested various ways of dealing with breathlessness, coughing and pain as well as the benefits of advance care planning and the need to deal with psychological and spiritual care needs when "hoping for the best but planning for the worst".  

He also highlighted the value of carers in a practical way, for example keeping a diary or record of drugs prescribed and medical appointments/interventions.

The Legal Panel Alida Coates and Ruth Davis

Ruth and Alida used a case study to show how a straightforward mesothelioma claim case can be handled efficiently under the current legal system and compared this approach to the timescales and steps proposed by the Association of British Insurers (ABI).  Needless to say, the proposed ABI regime is more complicated and time consuming and appears to be designed to string the process out as long as possible in the hope that claimants will give up or accept the first offer that's made, given the poor prognosis most receive on diagnosis....

Liz Darlison: Ten Top Tips

1. Knowledge is power - seek out trustworthy sources of information; learn as much as you can; find out about both the disease and treatment options; be aware of your entitlements; be aware of the National Guidance and Standards.  You can access the Mesothelioma Framework 2007 here  
2. Develop a Team - you are the boss; you are in the driving seat; know your key worker; identify your responsible consultant; have regular contact with your GP; have a buddy/partner to help you
3. Communication - don't presume things have happened; maintain a record of drugs/dates; tell the doctor what you want to know and what you don't want to know; use an accessible source, probably your key worker; keep information flowing; communicate by e-mail and text as well as phone calls and letters; don't wait for an appointment if you are concerned
4. Access expertise - ask informed questions; ensure you have continuity in consultations, ask to see the same doctor every time to build up a relationship; ask for or have an advocate 
5. Second opinions - rarely refused, but will take time and may delay treatment; if confused, don't be afraid to ask the GP or consultant to go over things again and explain; if you want to see another consultant, your GP will make the request; consider taking part in a clinical trial; talk and network using social networking sites, reading or writing blogs, joining a generic group; maybe attend the CureMeso conference in the States in March 2014?
6. Exercise - crucial; use it or loose it
7. Change- ill health changes your life; be prepared to change
8. Hope - vital; seek it out; if you have it, share it; avoid things that destroy hope; "once you choose hope, anything is possible" 
9. Emotional Self - don't ignore your emotional well being; there is a range of support available, use it!
10. Live - write the bucket list; travel; take a break from treatment; manipulate your appointments to suit your life; use your key worker and plan ahead; remember Mesothelioma UK is there to help you!

I understand that many of the presentations outlined above will go on the Meso UK website in due course.  I do hope so - it's not always easy to take notes with some of the presentations.  I also hope that my summary above, based on those notes, is accurate.  If any other attendees spot any errors, please let me know so that I can correct!  

In the meantime, I hope this will give you a flavour of the day.  For us, perhaps the most heart-warming thing was meeting other meso warriors, especially fellow blogger Tess and her husband Alan, as well as those we had met in previous years who are still here, living with not dying from, mesothelioma.  I hope that we will all be there again next year, including Jan and Mavis and the others in the Facebook Meso group who couldn't make it this year as they were too poorly.  And Debbie Brewer was there in all our thoughts x