Zytiga Saves Lives

Keen runner Eddy Newman has terminal prostate cancer. Here he reflects on how the new drug Zytiga gave him back his life.

In March 2006, I had aggressive prostate cancer at 59. I was very fit. I was a long distance runner and I loved every mile of it.

All the spare time I had was spent running or in the gym. I’d had a heart attack two years previously, but within six weeks, on a cold, wet December Sunday, I ran a 10k for the RNLI – it took me an hour and 25 minutes, but I made it.

I went on to live a normal life. I carried on with my training and running and completed many marathons.

A friend of mine had told me he had been diagnosed with prostate cancer and advised me to go and have a blood test. I wasn’t interested – my father had died of prostate cancer and I didn’t want to know if I had it.

My friend Graham nagged and nagged me to get a test and, eventually, I couldn’t put up with his nagging any more so I went and had the blood test. I’m now so grateful for his persistence.

When they told me I had prostate cancer it became another challenge to me – it meant nothing to me. I realised it could kill me, but we all have to die some day.

At the time in Wales, the only cancer treatment available to me was hormone injections, radiotherapy and chemotherapy. I wasn’t told what chemotherapy was or how it would be given.

My idea of chemotherapy was you went into a machine, lost all your hair and afterwards sat around all day in a white robe. From what I’d heard, I believed chemotherapy was the killer of cancer and gave you a chance of life.

I made up my mind if the cancer got out of control chemotherapy would be my ace card to save my life. How gullible I was.

I put off treatment for five weeks to allow me to run the London Marathon. But, in the back of my mind there was another reason why I didn’t want treatment – I had another marathon to run, this time it was against a horse.

But my wife had other ideas – she told me to grow up and she put her foot down. She told me in a very certain manor: “You start the treatment today,” and her word being law, I had my first hormone injection. I went on to run the marathon against the horse – 24 miles across the Welsh mountains – but the horse won.

I had hormone injections until May 2007. They affected my way of life. It would take all of my will power to run a race. I would start a race in the middle of a pack of runners suited to my pace and finish time. But after a short period of time, I’d run out of steam; I couldn’t run anymore. I had to push myself to carry on running. I would pick my pace up again and finish the race in a good time.

I had 30-plus sessions of radiotherapy from December 2006 and I was able to fit it in around my daily life.

By May 2007, my PSA had come down to 1.5 and I decided no more hormone injections. For the rest of the year my cancer was monitored every three months until September 2009.

The cancer and I had an agreement – I leave the cancer alone and it would leave me alone. It was a good arrangement.

My cancer stayed under control until September 2009. It then let me know it was in control, not me, it had better aces than I did. One morning, when I was running, I felt a pain in my right hip – it’s still there, but I’ve learned to live with it.

A month later, I was told my PSA had gone up and that I should start hormone injections again. I told the doctor all the reasons why I didn’t want them again and she said I was playing a dangerous game. She offered me tablets instead of the injections. I told her about the pain in my hip and she advised me to take the tablets and go on hormone injections – it was the only way they could control the cancer. I agreed to take the tablets. She had my best interests at heart.

In November, although my PSA had come down again, I agreed to go back on hormone injections.

But six months later, it was very high and I had a bone scan. It showed the cancer had left my prostate and had moved into my spine. I was told there’s nothing that could be done for me – the cancer will kill me. I was told it could take up to 18 months to five years.

My wife took the news very badly; she was very upset. I told her: “I’m a short time living and a long time dead. We’ve got five wonderful years – let’s go live a life.”

In November 2010, the doctors told me the cancer was starting to get out of control and I asked if I could go on chemotherapy – I was about to play my ace card. The cure for my cancer.

I struggled to cope with the chemotherapy. After hearing a radio programme about chemotherapy and cancer, I was advised to contact Keith Cass at the Red Sock Campaign, who also has advanced prostate cancer.

This person was a total stranger to me but we spoke for an hour and a half about prostrate cancer and the treatment and drugs available, including abiraterone, an experimental drug that wasn’t available on the NHS.

February 2011 was a bad month for me as I couldn’t cope with chemotherapy – I was very, very tired and depressed. I asked my doctor about abiraterone but was told it would cost me £42,000 as it wasn’t available on the NHS.

I felt everything I was asking for was no. The chemotherapy had taken my life away. All I wanted to do was find a corner, curl up and die.

I do not think I will live to April. How will my wife manage without me? We have been together for 42 years and have walked many roads together. This is the toughest walk that we have done together.

By March my PSA had gone up to 380 and was maybe still going up. The chemotherapy was not doing anything for me so I was taken off it, which was a great relief. I asked again for abiraterone and was told it was not available but my doctor wished it were.

The cancer had spread to most of the bones in my body. After meeting Keith again, I again asked my doctors for scans and abiraterone. My doctor agreed to write to the drug company to ask it to finance the abiraterone. The company agreed.

The doctor told me I was one of 19 people selected to try this drug, but he wasn’t sure it would do me any good. I didn’t not look fit enough to take it. He didn’t think it would improve my quality of life. I asked him to give me a chance.

I took my first dose of abiraterone on April 22, 2011; three weeks later I told my cancer specialist my life had changed 100% for the better. With the help of my son I changed and rewired the bathroom light, fitted an extractor fan in the bathroom, changed all the guttering and the down pipes on the house.

Although I’m not working as I used to be, I told him I was so glad I would do it. I still had the pain in my right hip but I was able to do all the work on my house that I had to leave before I went on chemotherapy. I could also drive again with all the confidence in the world.

I noticed the change just 24 hours after starting abiraterone – I was starting to get my quality of life back.

All the work on the house was finally finished 92 days after I’d started taking abiraterone – that’s how good this drug worked for me.

At a hospital appointment in July, my PSA level was down to 19 and my blood pressure was OK. I asked how long the abiraterone would last and was told it may last for 12 months. I have a life to live with what time I have. I do not have the time to sit and feel sorry for myself if this drug only lasts a year. I have things I want to do, places I want to go. A lot to do. I now live for the here and now, as I cannot plan the future.

The day that I was given abiraterone was a turning point for me. I was given another bite of the cherry. The drug does give me a few problems – my ankles swell up; I have a moon face and I’ve put on a lot of weight – but the price is worth it.

I’ve read articles from other men who were crying out to be given the chance that I have. I’m one of the lucky ones – if I had to pay for this drug I couldn’t have afforded it. The drug works for some but not for others, it worked for me.

To make my point on how well this drug has worked for me, I’m writing this in February 2012; in February 2011 I couldn’t write; I didn’t have a life, and no hope for a future. I am now once again me. I have hope and a future. I have a few bits and pieces not working; my old bones are clicking when I walk, and other things don’t work.

I will not pass an MoT. I will rust in a scrap yard, but I can live with that. I hope they don’t make use of me for spare parts.

Eddy Newman is 65 and lives in Cardiff