Mesothelioma Cancer & Lung Disease

UK Patients suffering from a form of cancer caused by asbestos exposure called ‘mesothelioma’ are in great need of a specialised treatment that is only available in Germany.

UK Patients suffering from a form of cancer caused by asbestos exposure called ‘mesothelioma’ are in great need of a specialised treatment that is only available in Germany.

Debbie Brewer was diagnosed with mesothelioma in 2006. After conventional chemotherapy, in 2008, she was told that not only her tumour had grown, but it was growing around her heart. Debbie then heard about a Professor in Germany ‘Professor Thomas. J. Vogl’ that was trialing a new treatment called chemoembolisation, and felt that the treatment may be her last hope. After 6 treatments her tumour shrunk by 83%, giving her partial remission.

I first knew of Debbie’s story when I came across her on Facebook. She had not only embarked on a mission to set up a petition for a chemoembolisation trial to treat mesothelioma in the UK in 2009, but was also promoting Dr. Vogl’s treatment; bringing hope to many other mesothelioma sufferers, like herself, who had been left with very little or no hope. Debbie’s story is an incredible testimony to what chemoembolisation treatment has done for her and her family, and her gratitude is poignantly evident on the facebook page that she has set up and dedicated to Dr. Vogl. She states:

“Please join me in thanking this amazing man, without people like him in the world who are prepared to go out on a limb, a lot of people would have no hope. The Professor has given me back my life, the greatest gift any human being could give another. There is not enough thanks in the world that would compare to what he has done for me and many others”.

Debbie continues to be a wonderful support to fellow mesothelioma sufferers and is an inspiration to all that have the privilege of knowing her.

The treatment called ‘Transpulmonary chemoembolisation’ is more effective than conventional chemotherapy as the drugs are injected directly into a tumour. Many UK patients who have travelled to Professor Vogl’s Clinic in Germany for the treatment say that not only their quality of life has been improved, but also prolonged.

For example – one patient – Ron Bonfield, age 70, from Devon, spent £22,000 of his own savings on the treatment. Chemoembolisation has transformed his health and now he is in remission. ‘Devon Primary Care Trust’ funded one of his five courses of treatment, but the funding is limited and has now ceased. Ron was recently on ‘The Politics show South West’ (31st January 2010) and he expressed his frustration regarding lack of UK NHS funding and treatment . . .

“I’m quite upset, knowing that there is a treatment out there that can prolong my life, not just by months, but by years and also give me a quality of life, but the NHS seem to bury their head in the sand and don’t want to know about it”.

Ron’s case has been backed by his local MP Geoffrey Cox, and he has written to the Health Secretary in support of mesothelioma patients.

Another mesothelioma sufferer ‘Gary Meager’ who sent a letter to the Politics show in support of chemoembolisation treatment wrote:

“Just like Ron Bonfield, I have been to Germany (at a cost of £24,000.00 all inclusive of travel and subsistence) to be treated by the same specialist (Prof. Dr. Th. J. Vogl at the department of Diagnostic and Interventional Radiology). I have also received the same outcome to the treatment and the same response from my PCT. (referring to Devon Primary Trust). Patients with other cancers are being treated in the UK by the same procedure. Patients with other cancers e.g. Kidney cancer are receiving treatment at costs that far exceed the Mesothelioma treatment in Germany. It’s about time the UK Government recognised the treatment. How much more evidence of benefit to patients is do the PCT’s need to enable them to understand the benefits are apparent”.

Dawn Veal – a nurse and who helps run a support group in Devon for patients with mesothelioma, rightly points out on the Politics Show that the drugs used in chemoembolisation are recognised by the ‘National Institute for Clinical Excellence’, who audit medications in the UK. She stated

 “so we have the drugs, we have the technique, what we need now is a trial to allow people to actually explore this technique for extension of life”.

Jenny Hill also wrote to the Politics show on behalf of her husband:

My husband (Ricky Hill) was diagnosed with mesothelioma in March 09. In May 09 he started chemotherapy of Cisplatin & Alitma. It made him very sick and ill and he spent most of the time in bed. Prior to each chemo treatment he had to have 2 units of blood because the treatment had made his blood count low. He had a scan after the 4th treatment and saw the oncologist. He said the treatment had not done anything to reduce the mesothelioma and he didn’t think he should continue with the remaining two treatments as they were making him so ill. He could not offer him an alternative treatment and was very much doom and gloom.

My daughter researched the internet and found Prof Vogl in Frankfurt hospital Germany offering chemoembolisation treatment trial for mesothelioma. She sent him my husband’s medical records and within a week my husband was in Germany having his first treatment of chemoembolisation (01/09/09) he had 3 further treatments at monthly intervals. He had a scan after each procedure and the results were good and promising. At the 4th treatment on the 18th Dec 09 he had a scan of the results from the 3rd treatment. He was told that the mesothelioma was totally dormant and no new activity elsewhere. He would not require any further treatment at this time. He now has an appointment for a scan on the 19th February. The side effects of the chemoembolisation were less severe to the normal chemotherapy he had previously. He felt sick for about a week after each of the treatments but he was able to carry on as normal. He now feels very well and is able to carry on a normal day to day life.

We had to pay over £20,000 for this treatment. His oncologist did not refer him for this treatment and would therefore not sign the forms for funding of this treatment by the Health Commission Wales. There is very little or no research for alternative treatment being carried out in the UK for mesothelioma.

The chemoembolisation treatment is working for my husband and others with this terrible illness and we believe that funding should be made available for this treatment. This treatment should be made available to all who need it not just to those that can afford to pay for it. Without this treatment my husband would not be here today. There is no cure at the moment for this illness and without the funding for research there is never going to be a cure. It is bad enough that my husband has to fight off this disease he should not have to fight for the right to have payment for the treatment he needs. Many others who have been to Germany for the chemembolisation treatment have had good results and seen an improvement in their condition.

What Does The Devon Primary Care Trust Have To Say?

In a statement Devon Primary Care Trust states:

“Local experts in the treatment of lung cancer do not wish to use the procedure…until more evidence of benefit to patients has become apparent. That said in this case there appears to be early indications that the treatment may be leading to some improvement. Although there is no application for funding pending…should future applications be received we would take into account the latest clinical and personal information before coming to a decision.”

Surely Personal Testimonies Are Evident Enough That Chemoembolisation Treatment Is Beneficial To Mesothelioma Patients?

For instance – One only has to go on Facebook (all links provided at the end of this article) to see how many mesothelioma sufferers are benefiting from chemoembolisation treatment. But I have corresponded with many of them – and I am deeply saddened by the unnecessary anxiety they have had to endure, (and some still have to) – such as having to travel to an unfamiliar country when they are ill, flight booking, (some during threats of delays) hotel searching, (that charge extortionate high season rates) making care arrangements for their children, and on top of all this – having to finance their own treatment!

Could you imagine how less stressful it would be for mesothelioma sufferers if chemoembolisation was available nearer to home, and they received relevant funding? Chemoembolisation therapy is commonly used in the treatment of liver cancer in the UK, so why not mesothelioma? It is time we had a clinical trial in the UK, and the 4 following facts tell us why:

1. Personal testimonies prove that chemoembolisation treatment is beneficial and prolongs life
2. There has been no reports of devastating side-effects from the treatment and evidence suggests that it is well-tolerated
3. UK consultants support chemoembolisation, acknowledging tumour reduction
4. Chemoembolisation costs about the same as conventional chemotherapy in the UK.

Note: If you feel that you could have any input in any way that would bring a clinical trial for chemoembolisation treatment for mesothelioma a step closer in the UK, relevant contacts are at the end of this page.

More inspiring and poignant testimonies in support of chemoembolisation treatment here:

Many thanks to you to all who have shared your story and participated in this article:

Debbie Brewer, Ron Bonfield, Gary Meager, Dawn Veal, Jenny & Ricky Hill, Veronica White, Keith & Judith Turnbull.

Written by Ann-Marie Waters.

Contacts:

Debbie Brewer website:  http://www.mesothelioma-and-me.com/

Debbie Brewers dedicated page -Professor Thomas Vogl, Mesothelioma angel:  http://www.facebook.com/group.php?gid=263532046239&ref=ts#!

Veronica White Website:  http://ronnywhite.blogspot.com/

PROFESSOR THOMAS VOGL

Johann Wolfgang Goethe

University Clinic (23c)

Theodor Stern Kai 7

760590

Frankfurt am Main

Tel : 00496963017277

Email : T.Vogl@em.uni-frankfurt.de

The Devon Primary Care Trust – NHS Devon, Commissioning Headquarters, County Hall, Topsham Road, Exeter, Devon, EX2 4QL Telephone: 01392 205205 or 0845 140 5005.

Email corporateservices.devonpct@nhs.net

BBC iPlayer – The Politics Show South West: 07/02/2010 www.bbc.co.uk

Mesothelioma – petition response August 2009:  http://www.number10.gov.uk/Page20326

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