Category Archives: Patients Personal Stories
My name is Debbie Brewer and I am 49 years old. I was born in Plymouth in 1959 and am the eldest of 4 daughters.
I have lived in Plymouth all my life and my father was a hard working man. He had many jobs including being a milkman and working for the local water board but the job that would implode on our family was with the MoD. He gave 3 years of his life to that job and started the time bomb which would destroy him and take him from his those he loved the most.
My Mesothelioma story starts in 1994, I was working as a dinner lady at my children’s school and was out in all winds and weathers. I called my GP out one evening as I was in so much pain and after having blood tests done, found I had contracted viral pneumonia. I continued to have terrible back pain and was struggling to breathe. I couldn’t walk up my stairs to go to the bathroom, I was so frightened that this was the end of my life.
I was referred to a chest specialist and was told I had fluid and scarring on the lungs probably due to whooping cough when I was a child. I was diagnosed with pleurisy and asthma, I thought no more of it and took the pain killers and antibiotics supplied by doctors as it was all I had open to me. The virus left me with terrible pain in my back and my struggling to breathe continued. In 1996 I became pregnant with my third child. I had another bout of the previous problems. I had the same pain, same breathlessness and was hospitalised with a suspected blood clot on the lung. I explained that it was the same thing I had been experiencing since 1994 and stayed in hospital for a week only to be told what I had told the doctors in the first place.
There was talk of doing a CT scan. This wasn’t done due to me being pregnant. I was 37 years old and knowing what I know now, my baby had saved my life as I probably would have listened to the medical profession and had chemotherapy. I didn’t bother complaining any more as I had 2 children from my first marriage and my new baby from my second. I was too busy to be in and out of hospital. That was until 2006. My father had been ill for a while, he had pleural plaque which made him struggle for breathe and now he had small cell lung cancer. He had worked for the MoD in Plymouth between 1963 and 1966 . His Job would be remove asbestos lagging from the pipes without protective clothing. This wonderful man did this to support his wife and 4 daughters. I watched my beautiful, young at heart father at the age of 69, turn into a frail old man before my eyes.
It was heart breaking. He never knew the problems I was about to face and I am grateful for that as I would hate him to blame himself, none of this was his fault. It was the fault of the greedy management he worked for who failed to tell him the dangers of asbestos and how it was going to impact on his family.
I searched on the internet to find out anything I could about pleural plaques and came across lung cancer, this must be what he has , I thought . . . Mesothelioma. I looked at the criteria for the disease and was shocked to find I had suffered most of the symptoms since 1994. My father never had Mesothelioma. I didn’t look into it any further until my dad died in August 2006.
I waited 3 months before I saw my doctor. I asked for a chest x ray to satisfy myself that I did not have Mesothelioma. How wrong I was, I was called back to see my GP the day after when he dropped the bomb shell, I could have Mesothelioma. I was devastated, I had started to get my life back together, my youngest son is autistic which meant a fight to get him into a school were he was supported. My older children were more independent, I was dealing with Alopecia as well, my hair has been coming out over the last 2 years, and I was starting to get a little of me back. My time was around the corner. How cruel this was. I waited for 2 weeks before I saw a doctor. I was supposed to have an endoscopy to take a sample from the lung for biopsy. This was declined as the tumour was too far down in the left lung.
I had a VATs (Video Assisted Thoracoscopy) operation on 4th November 2006 which removed 2 litres of fluid and take a biopsy of the tumour. This operation changed my life. The pain and breathlessness had diminished and I felt a lot better. It was a very painful day for my daughter as I have always made a big thing about celebrating the children’s birthdays and the 5th November was hers. Her comment was that it was the worst birthday she had ever had, I had to admit it probably was.
I had tube in my lung for around a week which the district nurse would try and remove fluid with a vacuum bottle. The tube was removed after no fluid was building up and, thankfully, it hasn’t since. I went back to the hospital on 13th November 2006 and was told the devastating news, I had Mesothelioma. I was heart broken, I couldn’t leave my babies. Was I never going to see my children move house, get married, have children of their own? My future was a blur, I couldn’t see anything other than my lovely children having to cope without me and I decided then that I was not going to leave them, there had to be something that I could do to save my life, the NHS wasn’t going to let me die, were they?
I saw my first oncologist around a 2 weeks later. There was no urgency in going any further and I was in a multi disciplinary team which is supposed to a team of experts in the field who would support the patient fully. (I haven’t had any feed back or contact from that team since leaving the oncologist in 2006). The oncologist was only interested in giving me chemotherapy and leaving me to die, I couldn’t get Alimta with him as he refused me and said I would have to go else where if I wanted it as he would only give me what was available on the NHS even though I had health insurance with my company. He told me I could claim industrial injury benefit, which I knew then I couldn’t as I had not worked with asbestos.
He then went on to tell me, while looking at the floor, I had 6 – 9 months left of my life. I point blank refused to accept this and decided to look for an oncologist who would be more supportive of how I felt. The next doctor was great and understood what I wanted. He told me people live for many years with this disease. I had radiotherapy at the site of the operation and decided to name my tumour Theo as I needed to accept it. ‘Theo’ as I call it – was good to me for over a year, no change had occurred, that was until January 2008. Theo was heading for my heart, I already had the cancer in the lymph node from the start. Again I felt let down, I was told by the second oncologist to go home and enjoy myself, how can I enjoy myself for petes sake, I am going to die!
I was told that younger people than me get cancer and lose their lives, which is terrible I know. He said that they haven’t had have what I have and I should feel grateful for my 48 years. Well I was never grateful for that as I had been poisoned just like my dad. I was determined to live and fight this disease that was trying so hard to take me away from my family and again was not prepared to accept that my life was ending. I have a website which was designed by my daughter and has been a great support tool for me. A wonderful couple had seen me on this morning with Fern and Phil and had contacted me as he had Mesothelioma as well.
They were trying alternatives and had been to a clinic in Worcestershire, Park Attwood, to have mistletoe therapy. The mistletoe boosts the immune system and makes the cancer cells vulnerable. I made an appointment at the clinic and started the treatment in May 2008.
The couple had also told me about a naturopathic doctor in Harley Street who worked on the blood determining a diet to beat cancer. I went to see him and he told me about a treatment in Frankfurt, Germany that had a Professor who had been having some success with Mesothelioma. That was it, what did I have to lose, I came home and rang the German clinic. I spoke to Professor Thomas Vogl who said he could help me and gave me an appointment for a week later. That was so quick, I got myself sorted and went over.
I was so sure I was going to get the usual knock back and was pleasantly surprised. The Professor was so positive and said he could help me. He said I had to survive as I was now one of his statistics! I had my first procedure done on 25th May 2008. It is called Chemoembolization and targets the tumour and not the whole system. Each treatment costs 4000euros. I could pay for it as I had had a compensation payout from the MoD in Plymouth in 2007 after they had admitted liability.
The procedure is done through the femoral artery in the groin. A catheter is passed through the vein to the tumour in the lung. The chemo is put in and is locked in with an embolizing agent which also cuts off the blood supply to the tumour. After the procedure, I rested for around 5-7 hours before seeing the Professor, he would update me on the procedure and what he saw with the CT scan before I returned to my hotel.
The side affects are being very tired and a little nauseous which lasts about 7 days. I worked full time all through the treatment as I wanted to keep things as normal as possible for my children.
I returned 4 weeks later for my second treatment and to get the results of the first. I had felt I had a little more lung capacity but put this down to the Professor and his positive attitude working on me psyche.
The Professor told me there had been significant changes, my tumour had shrunk! It was 10% smaller, I was thrilled. I had 5 further treatments and each one reduced the tumour more. I got my last results on 9th March 2009. My tumour had shrunk 73% since May 2008. I feel so well and love the fact that I have got my life back. The Professor has told me that I am his best example yet and is studying me to find out why Theo has responded so well to his treatments.I return to Frankfurt in June 2009 for another check up and hopefully more reduction. I am now campaigning to get the treatment trialled in the UK as there is so little available to Mesothelioma patients.
I want others to have the hope and joys I have had, I have been in touch with others with Mesothelioma who are having successes also and long may it continue.
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.
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.