The event opened at 9:45am with Helen Clayson welcoming everyone to the meeting. Helen also made all the speakers aware of her watchful eye being on the clock. She also advised that 2 3rds of the audience was made up of patients ad carers and their families. Helen is the medical director at the Hospice of St Mary of Furness in Cumbria.
She introduced Kate Hill as the first speaker.
Kate Hill - Trustee of June Hancock Mesothelioma Research Fund
Kate advised that the research fund had been active for 10- 11 years and had raised £500,00 towards research. She said the fund had also called for a global ban on asbestos.
She introduced Kimberley Stubbs and Russell Hancock who are June's Children and are also trustees at the research fund.
John Edwards -
Consultant Thoracic surgeon, Nothern general hospital, Sheffield-
TREATMENT FOR MESOTHELIOMA
Dr Edward's explained what Mesothelioma was and how it progressed and affected the patient.
He also told how there was knowledge of the dangers of asbestos 100 years ago. It even goes back to Greek times when the slaves who worked in asbestos mines were not bought as there was a history of lung ailments. The Greeks knew they didn't live very long.
Dr Edwards also talked about treatment options. Surgery, radiotherapy and chemotherapy.
He also talked about the trials and how they were done.
PHASE ONE - Is the treatment safe?
PHASE TWO - Does it work?
PHASE THREE - Is it better than any new or existing drugs?
He said that paients should consider trials as
"we stand on the shoulders of patients that came before us"
Which means it isn't just the patient who could benefit, it could benefit future patients.
The benefits of being part of a trial are :
* New non standard treatment.
*Support teams closely monitor patient.
*First to benefit and benefits future patients.
*Hospital visits are more fequent.
He pointed out that compared to some cancer trials that have over 4000 trials, Mesothelioma has only had 9.
Trails available and furture trials are :
*Alimta and Cistplatin V Cistplatin alone.
*Radio therapy - to determine if nodules are stopped from growing at the wound site after a VATs op.
Photodynamic therapy didn't work
No phase three trials have bee done to date.
Symptom Control
VATs (Video assisted thorascocopy) Talc Pleurodesis.
Debulk te tumour mass
Improve breathing
EPP (Extra Pleural Pneumonectomy)
Removing the lung as long as the lymph nodes aren't affected.
This is a very big operation and the patient has to be in very good health. 10% of patients are selected very carefully. 6% suffer fatal complications and 50% suffer complications.
Dr Edwards asked "should it be performed"?
This is a MARS trial and as yet there has not been a phase three trial and surgery is only avalable in certain parts of the country.
WHAT CAN YOU DO?
* Take part in trials.
*Ask for access to trials.
*What are the opinions of centres of experience?
* Is there a specialist Multi Dicaplinary team (MDT) in the local hospital?
* Are you prepared or well enough to travel?
*Promote the trials.
Dr Edwards said what all Mesothelioma paients say, "Patients don't want money, they want there lives back". He said more money needs to be put into research for Mesothelioma and advised that it isn't just the UK but other countries. 300,00 tons of asbestos had been shipped to India.
Dr Jeremy Steele - Consultant in Onclogy, St Bartholomews Hospital, London and Chair of Mesothelioma UK.
CLINICAL RESEARCH FOR MESOTHELIOMA
Dr Steele explained what asbestos was. He showed pictures and explained that it was a rock, woven and milled into powder. In the developing world, Bombay in particular, people still lived in asbestos fibre board houses.
Why does it cause cancer?
Fibres are breathed in and sit in the lung. The body tries to remove it, the finre is too big for the cels to break down and too small to be coughed up. He equated it to having a splinter in the finger. The area affected becomes inflamed. Cytokines respond to the disease and try to heal and repair the body. This makes things worse as the cells start to turn to cancer.
It also changes the DNA in the body.
Attitudes have changed towrds Mesothelioma, PET scanning is done which is a sugar based dye which shows up the cancer cells on the scan. Cancer cells get very excited with sugar.
Again Dr Steele advised that there needs to be more funding in to researching this disease.
He said there should be a national tissue bank which would store biopsy tissue for future research. Australia has a 2,200,000 budget for research into Mesothelioma and the UK needs to follow this. Development of drugs that reverse the asbestos damage and fid what makes the cancer grow.
There should be a national asbestos disease research centre and a national programme of clinical trials.
It was so good t hear 2 Dr's who want the best for their patients and are prepared to head the fight.
Picture
Me with Diane from HASAG
Geraldine Coombs - Solicitor
OBTAINING COMPENSATIONGeraldine Talked about legal rights and compensation for Mesthelioma victims. She said there were specialist judges to evaluate claims. The suffere should have the following information:
*Work history to identify exposure
*Work inforamtion to trace the company/insurers
*Detailed witness statements
*Inland revenue will have history of employment
She talked about people who had noteboos with asbestos sheets wriiten in the order.
If the company has gone out of business, the insurers should be tracked down.
Put out appeals to witnesses/employees who maqde have worked for the company. This can be done through news paper adverts.
the USA have a trust (Manville) for claimants which the claimant gets 5% of the payment.
If the person dies before the claim has gone through, the widow/child can carry on. Sme solicitors have aq "no cost to you" service. Provng the claim is the most important so the more information available, the better.
If you are self employed, there is no company to sue.
Patients Experience
David Garrood
David is 74 years old and doesn't look it. He talked about how he was diagnosed in August 2004 with a tumor in his abdomen. He was given 12 months to live. He had 6 treaments of Alimta between October 2004 and February 2005. He has a factor AF2 treatment in Germany which is for maturing cells to fight the cancer and takes Mistletoe 3 times a week. His wife does it has he is sqeemish. His GP calls him his "miracle man".
I was very impressed with David especially as we were both takng the mistletoe and going to Germany for treatment.
Debbie Brewer
I spoke about my experiences. As Helen say, ME- sothelioma it was all about me.
I am not going to detail it as it is all on the site.
I did get a lot of feedback as I had my good result from Germany (33%)
Overview of benfits for Mesothelioma
Tony Whitston- Greater Manchester Asbestos Victims Support Group, Representitive Asbestos support groups forum
Tony talked about the new lump sum payments for mesotheloma sufferers.The payment depends on the sufferers age at diagnosis. The older the sufferer when first diagnosed, the less the payment.
He talked about the DLA and AA payments.
He said that compensaqtion payments are used as income replacement and this shouldn't happen. He asked for the DWP to follow the Barrow jobcentre and remind patients to claim their benefits as elsewhere there is no reminder.
Diffuse Mesothelioma Scheme*12 months to claim from date of diagnosis.
*12 months for next of kin to claim from date of death.
*Circumstances may allow claims after the dates depending on information.
*USA payments can cause problems
The goverment stance on insurers and payments needs to be changed and the insurers need to pay 100% of the compensation.
Jill Morrell - head of public affairs British lung foundationCampaigning for MesotheliomaJill advised that BLF have 70 employees, there is a 5-6 million income each year. They work for anyone affected by lung disease. They support patients, raise awareness and campaign for changes. They fund respitory nurses and have a national helpline. 1 million is spent on research and mesothelioma research has been funded by them at a cost of £415,000 which was used for a cancer vaccineand for more inforamation about Alimta. Lung disease is a low priority for the goverment as it has the stigma of smoking attached to it. They are committed to making a difference and have successfully campqaigned for the Mesothelioma charter. There is a national day in February, Action Mesothelioma Day.
If there are any comments, email them to
campaigning@BLF.UK.org.
A cheque was presented to the June Hancock Research Fund by Susan who lost her husband, Alan to Mesothelioma. Her family decided to do the Jane Thomlinson Leeds run and raised £1,260. This was presented to Kimberley and Russell, June's children and trustees of the fund.
Linda Reinstien Executive and co-founder of Asbestos disease awareness organisationAsbestos-the global issue and developing a matrix of careI missed some of Linda's talk as I was being interviwed by a radio reporter.
I caught some of it. Lnda had lost her husband and was quite emotinal but talked with dignity and pride about him. Her message was "don't do what I did" as she didn't have any help as a carer when he was ill and suffered for it.
She was a lovely lady who had travelledfrom America to be at the meeting.
Michael Lees- Author of the report "asbestos in the classroom"Michael's wife, Gina had Mesothelioma and has since passed away. She worked as a teacher and was exposed to asbestos in the school she worked in. She was 51 years old. She died 8 years ago. Micheal explained that asbestos was used at its peak between 1945 and 1974 and is in all schools built, refurbished before 2000. It was used in large amounts. Michael talked about the different asbestos fibres:
*Chrystolite-causes Mesothelioma
*Amasite- 100 times more dangerous
*Crocidolite- 500 times more dangerous which contradics a letter Suzanne sent me from the telegraph saying that not all asbestos was dangerouus and the person could remove it from his garage himself and contact the council for details of where to take it. No need for the men in white coats, it said (?)
Apparently there is no known threshold so there is no known risk (?)
*Ceiling tiles in schools that are not ceiled in the gaps can produce dust.
*6,600 fibres are released with a drawing pin in an asbestos notice board.
The goverment says it is safer to leave asbestos in school undisturbed. Head teachers have no knowledge of the dangers and is a foreign language to them. 21 teachers have died between 1980 and 1985 and this is climbing rapidly. The goverment stance is that any commisioning surveys may provoke un neccessary panic. What Michael said was that if parents werte told, their children would kick the walls on purpose to produce the dust.
Michael wants :
*All schools to have a thorough asbestos survey
*a nationwide audit of schools
*phased removel of asbestos in all schools.
*write to schools asking to see their asbestos register/survey.
* It will all come under the freedom of information act.
Website details
http://www.asbestosinschools.co.uk/Helen ClaytonUnderstanding reatlessness and pain in MesotheliomaHelen talked about the limbic system which displays and controls emotion. It is activated by breathlessness. Breathlessness means a threat to life, suffocating even death.
Medical management would be to
*remove fluid and prevent reoccurrence. To maximise the lung function with medication and excercise.
*Reduce the tumour bulk in some cases.
*reduce perception of fluid by using morphine which reduces affects on stretch recepters. It tricks the brain into thinking there is no shortness of breath.
*Oxygen is only of value when oxygen is low
There should be an individual management plan and rehabilitation. Complementary and creative therapies can be used.
*Involve carers and family members and explain how to assist
A fan will reduce breathlessness because ofa the receptors in the face, hand help are better.
Stimulation of these nerve receptors send signals to the brain.
Paqin, the tumour is highly inflammatory and is a frequently complex pain. If the pain can't be controlled, seek expert help. There is a procedure called Cordotomy which cuts the nerves and numbs the area which has most pain, this is NOT reccommended.
What's ahead
*Nasal Morphine
*heat patches/pressure sentive packs
"It's not just about pills"Natalie Doyle- Nurse consultant, rehabilitation,Royal Marsden hospital, London.How to keep controlMesothelioma
is a whole new career, fitting in more time with friends and family as they call and want to meet up more than before.
Let these people help, they wouldn't ask if they didn't want to.
Your worth it, as knowledge increases, anxiety decreases. Be dignified, If it works, it's right.
She had a quote from Oscar Wilde
"Nothing is worth doing except what the world says is impossible".Travel insurance was mentioned and there is more information which I will find and add to the blog.
I arranged to meet my friend, Helen this evening. Kieran is good friens with her son. They went trick or treating and then I t
ook Kieran to his dad as he wanted to see him as well. 
We had a lovely day yesterday, we went to Paradise park which has exotic birds and has farm animals.
Kieran and I had a lovely afternoon with Sue and her little dog, Jenny.
He was very settled in the garden and was enjoying the sunshine. He is a very friendly, cuddly cat and enjoys the company and the fuss he gets.
Picture Jill Morrell, Myself and Kimberley Stubbs 
Picture Graham Sherlock-Brown and me
I asked them if I could have a picture for the blog and they agreed. Apparently they are a bowling club and dressed up once a year, they didn't tell the lady who was Andy Pandy who they were dressing up as until the day of the event.