Veronica White - Yalding, Kent, UK - Her Mesothelioma Story

"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 five months later 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 CT scan, which showed my right lung had lots of fluid in it. My lung was drained and 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 the hospital. This was a particularly painful and difficult time; 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 who brought me in to check and found that I was correct. 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 to thin quite a bit. Fortunately I had a lot of hair so it didn't look too bad.

On follow up by my Oncologist in January he said I was currently stable. He also told me about a Medical chemo drug trial of Sorafenib starting at Guys. He did say it would come to Maidstone in about 6-8 weeks and I opted to wait for that. In the event it didn't come to Maidstone 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, on the August visit, my Oncologist at Guys said the drug wasn't working and that my tumours had been growing for three months! Understandably I was upset at this news. Firstly because the drug Sorafenib wasn't working and secondly because my cancer was growing. My Oncologist told me there wasn't really much they could do but for patients who insisted on more treatment he could prescribe Vinorelbine. But the inference was that, 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 chemoembolization 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. The Doctor who had called him to us because she felt out of her depth at our questions looked shocked too.

I had already found out about Prof. Dr. Thomas Vogl, via the Internet and Debbie Brewer who had had treatment from him and was now well. I had been in contact with the Prof. who said send our scan result and a CD and he would see if he could help. He telephoned within three days upon receipt of the scan details and said he could help and to come the Germany. We delayed going for 6 weeks as we were trying to get PCT funding as the treatment is all approved by NICE but not available for Mesothelioma. Six months later they still have 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 had my fourth treatment on the 3rd of February and I was told that my 'tumour is sleeping but is still a terrorist.' The Prof. will now see me in three months, when he will do a full body CT scan and a MRI scan. He will then decide if he will need to do any more treatment. He will also talk to me about ablation treatment if he considers it necessary.

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 chemo 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, that we did in May 2009.

Because of the chemoembolization 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 Christmas or see my young grandson grow up. Now I feel more optimistic of at least an extended life and am more philosophical about my illness. All the time I am 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 book our flights straight away and usually by BA, and the strike talk was very upsetting. In the event it didn't happen but we booked Lufthansa for the February appointment."

Read her blog here: Veronica White

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