Mesothelioma Cancer & Lung Disease

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.

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