Mesothelioma Victims Need Chemoembolisation Trial In The UK

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:

My Mesothelioma story – Veronica White

My name is Veronica White and I am age 62. I was diagnosed with Mesothelioma in April 2008 after breathing difficulties. My Doctor treated me for Asthma until I said I wanted to be referred to a hospital consultant. I had to wait nearly three months for an appointment.

I was given a scan, which showed my right lung had lots of fluid in it. A sample of the fluid was sent for analysis and it took 22 days for the result to come through that I had cancer. I had a pleurectomy on the 19th May and was in hospital for 11 days, my drains came out another 11 days after discharge from hospital. This was a particularly painful and difficult time as I had to have a nurse come to the house to dress the drain site which was very sore.

July – I started Radiotherapy on the operation wound and drains sites. After three sessions I realised that the radiotherapy had missed the drain site and contacted the hospital. I went back for a check-up and my suspicions were confirmed. I then had another radiotherapy session on the drain site. Chemotherapy started also in July and I had six sessions of ‘Pemetrexed’ (Alimta) and ‘Cisplatin’ until November. This was very difficult as the hospital had a lot of trouble getting the cannula in to administer the chemo, which mostly took about 12 – 13 hours each time. The nurses were very understanding though. During this treatment I was very sick and felt very ill, also my hair started thinning quit a bit. Fortunately I had a lot of hair so it didn’t look too bad.

On a follow-up by my Oncologist in January he said I was currently stable. He also told me about a Medical chemotherapy drug trial starting at Guys hospital. He did say it would come to Maidstone in about 6-8 weeks and I opted to wait for that. In the end it didn’t come to Maidstone though so I went to Guys on 31st March 2009.

I started the trial and found the drug very toxic to me. My hair started falling out in greater amounts than before and I got myself a wig. I had a rash all over my face, neck, and ears and got nasty blisters on the bottom of my feet as the trial went on. Each monthly visit I was told that I was still stable. However, during my August appointment my Oncologist at Guys said the drug wasn’t working, and that my tumours had been growing for three months. Understandably I was very upset at this news. Firstly, because the drug ‘Sorafenib’ wasn’t working, and secondly, because my cancer was growing. I had already found out about Prof. Dr. Thomas Vogl, via the Internet and Debbie Brewer -  who had received the treatment from him was now well.

My Oncologist told me there wasn’t really much they could do for patients who insisted on more treatment, and  he prescribed me with ‘Vinorelbine’. But the message I got was that was it for me now. I mentioned the Prof. to him and he got quite heated about patients wasting money and going off all over the world chasing treatment. He also said that chemoembolisation couldn’t possibly work on this type of cancer, and that the Prof. couldn’t get all of the cancer anyway. We were both shocked and upset at his reaction and how callous he seemed. He was running very late that day and obviously overworked but he could have shown us a little humility after the news he had just given us. Even the Doctor who had asked him to assess me (because she felt out of her depth at our questions) looked shocked too.

I had been in contact with the Prof. who asked me to send my scan result and a CD, and he would see if he could help. He telephoned me upon receipt of the scan details and said he could help and that I should come Germany. We delayed going for 6 weeks though as we were trying to get PCT funding as the treatment is all approved by NICE, but not available for Mesothelioma. But six months later and they still had not made a decision. I went for my first treatment in October. My second treatment was in November and I was told there was about 5% improvement and that the pressure of the tumour was reduced. This was very good news for us. I had an appointment with my surgeon, who likes to keep in touch with her patients, after the second visit, she gave me an X-ray and was delighted with the results. She wrote to both of my Oncologists saying how pleased she was.

I had my third treatment on January the 2nd and the Prof. was delighted with the results, saying I may only need one more treatment after this. He said the tumour had even less pressure in it meaning that it was dying. We were ecstatic with this news.

I have my fourth treatment on the 3rd February when I will find out if it is the last treatment of Chemoembolisation or not. He will also talk to me about ablation treatment. I wish I had known about this chemoembolization treatment before the operation, as this took about 10 months to recover from, and the pain from the drains 15 months to ease off.

It seems to me that it would be cheaper for the NHS to pay for this treatment than operations and chemotherapy, which must cost several times more overall? I found out about Debbie Brewer because she mentioned that she had Mesothelioma when she sponsored my daughter, who was racing with me in the ‘Cancer Research Race for Life’, in May 2009. Because of the chemoembolisation treatment, I am racing again this year. When I was diagnosed I knew that I only had 8-12 months left. This was devastating for my family and me. We were all in shock, firstly about the initial diagnosis but then again at the prognosis. I was worried I wouldn’t make it to Christmas or see my young grandson grow up. Now I feel more optimistic at  least of having an extended life, and are more philosophical about my illness. While I am feeling quite well – I will have hope.

The cost of the treatment in Germany is very high, about £4,500.00 per visit. This is the treatment, the Hotels, who charge astronomical rates when there is an exhibition on, and this is often, plus the flights and the parking.

We were very anxious over the Christmas period as we normally book our flights straight away and usually with BA, but there was talk of an impending strike and it was very upsetting. In the end it didn’t happen, but we have booked Lufthansa this time, just to be on the safe side.  There is a tremendous support network on Facebook, and we all get comfort in helping others who are just starting this journey, and gain strength from those that are further on.

My Mesothelioma story – Keith Turnbull

My name is Keith Turnbull and I am 65 years old in May I was diagnosed with Mesothelioma in October 2008 following a VATS procedure and a biopsy in Harefield Hospital Middx. My Oncologist at Watford General Hospital where I had originally been an inpatient gave me no hope and offered me no treatment other than palliative chemotherapy which would only prolong my life by 3 months and would probably leave me totally deaf as I already have no hearing in one ear and less than perfect hearing in the other. I was very despondent about the outcome and returned home having been told to just make the most of what life I had left. My daughter Lise noticing how despondent I was searched the internet for help and found out about Professor Vogl’s work via Facebook and Debbie Brewer’s Blog. Lise contacted Debbie for further information and talked to Professor Vogl regarding my situation. After examining my scans sent to him from my son-in-law he decided I was a suitable candidate for his Research Programme and offered for me to go to Germany and talk to him regarding Chemoembolisation. Debbie had also mentioned Mistletoe therapy at Park Attwood Clinic near Kidderminster as being part of the whole package as it would kick – start my immune system. I talked to Dr Orange the Consultant Oncologist and Director at Park Attwood and he convinced me to go to Kidderminster and undergo the Mistletoe therapy prior to undergoing Chemoembolisation as both he and Professor Vogl were in agreement that the two treatments worked better in tandem. I decided to consult with the Consultant and Surgeon at Harefield to see if there was anything that could be done on the NHS as by this stage I was no longer able to work, however, he could offer me no other hope than an E.P.P. and this only as a matter of last resort. At this stage I was emotionally upset and in a depressed state as was my wife Judith so it took a few months to get my head round the idea of trying something new, not available on the NHS and moreover not in the UK.

Eventually with some cajoling from my daughter, my wife and the rest of our family I was persuaded to try out the Mistletoe therapy on a private basis at a cost of several hundred pounds a visit and with great trepidation my wife, my son-in-law, and I, flew to Germany to see Professor Vogl for a consultation in August 2009 as at this stage I felt I had nothing to lose. Within the hour he suggested that I should have a MRI Scan to be swiftly followed up by the Chemoembolisation treatment. Consequently I didn’t have time to have any doubts about what I was about to do, especially as my wife and son-in-law had travelled with me and my son-in-law had taken time off work and I felt I couldn’t let them down. We paid the money over and I went off for the treatment. Although not painful it was definitely uncomfortable and I was glad when it was over and I was taken to a ward to recover. This took approximately 5 hours and then I had a CT Scan before I could leave the clinic .Professor Vogl told us that he wouldn’t be able to tell us how the treatment had gone until my next scheduled visit the following month.

I have now had 4 monthly sessions of Chemoembolisation preceded by the Mistletoe therapy at a cost of 4,000 euros a time for the German treatment, this is not including the flights for myself, my wife or my daughter who has accompanied me on the last 3 visits or the hotels in which we have stay. In order to come with me and to support my wife my daughter has now given up work as it was proving more difficult to find childcare for our two grand-daughters. Consequently we are all undergoing financial hardship at present and my wife has resorted to fundraising to pay for my treatment as the original government payment of £17,000 that I received due to contracting Mesothelioma almost certainly via my father whilst he worked for the local Cape Universal Asbestos Company has disappeared through funding all those Chemoembolisation treatments. This leaves a bitter taste in my mouth as that money was supposed to help to provide for me for the rest of my life however long or short it may be and pay for any aids I might require due to the nature of my illness. I am now reduced to paying for any further treatments by way of my savings and friends and family have been generous with their donations but that can’t last for ever Professor Vogl ’s research and treatment has improved my quality of life to such an extent that each time I go to Germany my breathing has improved and the cancer cells have reduced significantly and the last time I went in November 2009 Professor Vogl told me that the “cancer had been rendered inactive” which was a wonderful feeling, especially as he told me that I didn’t have to go again until this month (3 months later) and that unless deemed necessary I will only be having a MRI and CT scan.

It is so hard to believe that I’m still alive as I was told by the Consultant in Harefield last year that he would only expect me to live 6 months so it’s due to Professor Vogl and his brilliant research programme that I am alive today. If only this treatment was available in the UK and on the NHS, as the procedure is actually carried out here for Liver Cancer patients so it can’t be rocket science, many more innocent victims of this terrible cancer could have some hope for the future. As it is we just have to keep hoping that our savings will last as long as we need treatment to stay alive.

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