Living With Mesothelioma -My Diary- A Great day at the HASAG Mesothelioma Conference


I have attended a great Mesothelioma Conference today.

We got lost getting there but a lovely Student helped us and we finally found the venue at the Greenwich University Chatham Dockyard and was soon parked up.

We had coffee and signed in and then went to the conference room which was just like the student lecture rooms.

Pool Room, Small Lecture Theatre, Dental School

So we settled down to Dr Alasdair Stewart a Chest Consultant, Lung Cancer for Medway NHS. talking on Related Disease.

He said something I didnt know and that was that blue Asbestos is like a twig that runs through the veins smoothly but gets to the lung it has to turn and thats when it sticks.

Also 64% of people in 2007 had never heard of Mesothelioma and 32% not aware that asbestos caused cancer. I do hope that things have improved until now.

Another fact was that in Medway the average patient was over 71-80 and they dont know why that is.

I have seen so many Xrays that look just like mine it made me shiver every time.

IMG_20140902A_133206

 

 

 

 

I really am a average looking patient.

Dr Andrea Oustaylannis a GP in Medway. talked about early recognition of thoracic malignancy in primary care.

A list of symptoms was put up but I didnt have any of them, well when I thought about it I did have a lump in my throat once and funny enough as I touch it now its gone, I did get a swelling on the left side of my face and thats not gone. I lost a lot of weight after I went on a Weight Watcher diet and when I got to gold I did say I was loosing weight still and went right down to 10 stone, when I retired. Im 5ft 9 ins so I did look very thin.

Pleural effusion diagnostic pathway issue of Tissue was next Dr Jay Hettiarachchi A chest Consultant at Medway gave his talk.

The most common conditions that result in effusions are cardiac failure, pneumonia, and malignant neoplasm. Diagnosis of a pleural effusion begins with obtaining the patient’s clinical history and doing a physical examination and is followed by chest radiography and analysis of pleural fluid in appropriate instances. If necessary, the process continues with further investigative studies, such as computed tomography (CT) of the thorax, pleural biopsy, thoracoscopy, and, occasionally, bronchoscopy.

The mesothelioma can be misdiagnosed as the seeding can be spaced out. Also a bi-op can be negative as they might not be doing that in the right area. they do keep the times down to get a result faster so the patient doesnt have to wait long for a diagnosis. This does get better year by year.

Dr Shar a medical oncologist in my team at Maidstone talked about the new trials. He is preparing one that is :-

Cisplatin + pemetrexed is the only licenced chemotherapy treatment for malignant pleural mesothelioma (MPM) based on the registration trial (Vogelzang et al 2003 Journal of Clinical Oncology 21(14), 2636-2644). There are no other licenced drugs with approval for use in this disease. In the UK standard first line treatment incorporates chemotherapy with either cisplatin or carboplatin (platinum) in combination with pemetrexed.

First line chemotherapy helps to prolong survival but unfortunately it is inevitable that the cancer will start to progress again. Many patients in this position will be fit for chemotherapy, however there are no licenced second line chemotherapy drugs. This puts clinicians and patients in a difficult position. Vinorelbine is a chemotherapy drug that is often used as a single agent in the second line setting within the UK. It is relatively well tolerated, available in an oral formulation and affordable (by the standards of many new cancer drugs). Unfortunately the data supporting its use in this setting is limited and it remains unlicensed.

There is an extensive anecdotal experience suggesting that rechallenge with platinum and pemetrexed is active in the second line setting with acceptable toxicity, however this has never been tested in a formal randomised clinical trial.

We propose conducting a randomised phase III clinical trial in patients with malignant mesothelioma. The patients will already have had first line chemotherapy with cisplatin/carboplatin + pemetrexed and shown evidence of clinical benefit. Our definition of this will be patients in whom chemotherapy has controlled their disease for 6 or more months.

Many of us didnt realise that they dont use the same chemo in 2nd line. I dont think it matters what they use so long as we the patient can tolerate and if we get stable or shrinkage that is all that maters.

He talked about all the trials we know about even my own MK3475 that not all patients have no problems as diabetes can start and I have heard this infact I have had trouble with a dizzy spell that they have found my sugar levels do drop.

http://onestopmesothelioma111.weebly.com/maps-of-trial-centres.html Please check for trials here.

Mr Loic Lang-Lazdunski Professor in Thoracic Surgery http://www.londonbridgehospital.com/LBH/consultant-det/professor-loic-lang-lazdunski/

He says each patient should be sent to see if they would be suitable for surgery and so I so wish I knew him 6 years ago. I was stronger then and he does operate on older people.Taking the linings or the whole Lung out.

Lynne Squibb told her story of her fathers journey with Mesothelioma and why she started HASAG. A very inspiring story.

http://www.hasag.co.uk/

November 2004 started in the usual November way, coughs and colds were rife so none of us were particularly concerned when we all went down with it too..

December and January passed and we had all recovered except Dad.

Mum spent the whole of January nagging him to see the doctor and finally at the beginning of February 2005 that appointment was made.

The doctor confirmed that there was fluid on his lung and instead of the antibiotics we were expecting, his lung was drained and he was diagnosed with Mesothelioma.

Dad was always a fit person, at 71 years old he had never learnt to drive and so would regularly walk into Eastleigh, the nearest town.

He also walked down to the village shop every morning to collect his newspaper, but what he had neglected to tell us, was the increasing breathlessness he was experiencing.

Dad had spent his whole working life at Eastleigh Railway Works and many times he had spoken about the continual exposure to asbestos. He would also talk about the increasing numbers of his work friends who were being diagnosed with what we only knew as ‘asbestosis’.

He took early retirement during 1995 and was determined to enjoy the new leisure time he had gained.
Dad loved genealogy and taught himself how to input all the information onto his new computer. He was a very active person, loved Bowls and would always have his sleeves rolled up, whether it was doing DIY for all his family or pottering around in his beloved garden.

As you can see from the link they have a great support group and put together great conferences.

Meothelioma Uk nurses Denise Hodges and Ann Moylan  spoke next on a My Group dear to my heart. There are great Support Groups out there if you google.

Dr David Oliver a Consultant in Palliative Care spoke about the Wisdom Hospice and all the great work they do.

The Wisdom Hospice was opened in 1984 and was named after Molly Wisdom who raised money for a hospice in the Medway area, even though she herself was dying of cancer. Following her example the Friends of The Wisdom Hospice were able to raise the rest of the funds to build the Hospice. The Wisdom Hospice is now run by the Palliative Care Services of the Medway Primary Care Trust. The Friends of The Wisdom Hospice make an annual grant to the Medway PCT of £587,000 towards the running costs of the Hospice (approx 1/3). Additional funds have been made available for increased medical and nursing staffing and for a Benefits Advocacy Worker. In addition the Friends fund the hairdressing service and chaplaincy at the Hospice and provide extra equipment and facilities that do not fall within the PCT budget. To provide extra care for patients in their own homes, annual grants are made by the Friends to Crossroads and the Marie Curie Nursing Service. In 2004 a £1.3million refurbishment and extension project at the Hospice, funded by the Friends, was officially opened by TRH The Earl and Countess of Wessex. The Friends of the Wisdom Hospice relies on the support of the community to maintain and extend the services provided.

They do wonderful work within the hospice for end of life.

Asbestos and the Law had a panel of Solicitors talking to us About claims that was very interesting and also about the new Mesothelioma Law.

A person of 69 will get £131,493 Pay out + £7,000 for the cost  for a solicitors fees but they dont charge that so the patient can keep the balance.

We were told they are in Mesothelioma because they do care that Asbestos caused such a terrible illness and to be honest I truly believe that as they talked passionately about their job and their patients and what one of them did for a recluse who lived in totally rubbish that was spread throughout his house. They had the rubbish cleared and the man then lived in a really lovely and clean house for the rest of his days.

A little bit perplexed that one said that the Hospice claim back from a persons estate the cost of a stay in a hospice. I didnt know that and on searching I come up that treatment is free so I have a bit of research on that to do.

Dr Stewart closed the day then on how we can improve the outcomes.

I like the idea of Regional Centers where all the expertise is in just a few main hospitals so they condense it all. The Marsden works like this now and I love it. Ok we have to travel but you have all the answers in one place.

Your Gp would be able to email when a patient presents themselves with difficulty breathing and they would be accepted straight into hospital and avoid A&E.

Rays Blog http://mesoandme.wordpress.com/2014/11/25/tuesday-119/

 

 

 

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