Tony's story

Tony was diagnosed with advanced prostate cancer in 2003. He joined a clinical trial in 2014. Watch Tony's story.



I was diagnosed with advanced prostate cancer 13 years ago. It was okay, I was handling it all until I got the result that the surgery had not been successful. They’d removed the prostate, but there was more cancer somewhere else. My urologist referred me to a medical oncologist. It was probably more his initiative rather than me chasing down the details of this particular trial that got me started on the thing. Well, it was really just a logical flow through from the fact that I had advanced disease. There is no cure. If you want to extend your life and potentially help others, hopefully then mechanisms like clinical trials are a very important potential tool for you.

My clinical trials started in June 2014, so I've been on it now for almost 2 years, and the tumour pain stopped a couple of days after I started taking the enzalutamide and the PSA, which was a sort of a measure of the amount of cancer in the body, has been progressively and steadily dropping ever since. At this stage I've had almost 2 years of high-quality life extension out of the enzalutamide.

Now, the side effects of the drug, basically some fatigue, and I can handle that. It's a matter of taking 4 pills a day and visiting a doctor at Macquarie University Hospital once a month. Even just from the point of view that I'm seeing the doctor once a month instead of once every 6 months, and I'm talking not only to him but to the other health professionals that are there, means that I'm picking up a fair bit of extra care just from those involvements.

The people that are there, are caring people and they're knowledgeable about the sort of technical medical aspects of the situation and that's all a great benefit. The researchers are absolutely great people, and the quality of the research they're doing here in Australia is world class. There's no doubt about that. That tends to give you a psychological boost as well, because you feel as though you're taking the fight to the enemy a bit. However small your contribution to the research project may be, you're actually doing something to hopefully assist getting some breakthroughs down the track.

Doctors are very, very busy people and sometimes they need a little bit of prompting to explore the various options that might be available, and one of those is clinical trials. Because there's a lot of clinical trials happening, it's quite difficult for the doctors I think in many cases to keep up with all the detail. I felt that I needed a bit of extra advice and got onto a guy called Max Gardner. Max was one of the founders of the Prostate Cancer Foundation of Australia, and he was suffering from the disease himself, he died not that long after from it, but he was a really great help to me in that early stage of realising that I had to deal with an advanced cancer which was terminal then and probably is still terminal today.

Instead of being a semi-invalid, I've been able to sort of interact with my grandchildren. They love coming here and jumping in the pool and all that sort of thing. I have been able to continue doing a lot of stuff in regard to both the cancer and other interests that I have. The extra time that I've had that's been quality time has allowed me to indulge those interests and hopefully can end up with something that's helpful and useful to other people.

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My current clinical trial is a lifesaver for me.

I was diagnosed with Gleason 8 prostate cancer at age 57 in 2003. A radical prostatectomy failed to lower my PSA of 6 even though all scans were clean.

Then followed 12 years of continuous Lucrin hormone treatment. My PSA dropped to near zero but then rose again to reach 70 in June 2014. At this time scans finally revealed a tumour in my right pelvic lymph node. At the same time I qualified for a clinical trial involving two new drugs, Enzalutamide and Abiraterone. This was a safety trial involving drug combinations where all participants received Enzalutamide in Stage 1 and when that starts to fail participants will be randomised to 2 arms in Stage 2 – one arm consists of Abiraterone and the other a mix of the 2 drugs.

I have now been on Enzalutamide for 15 months and my PSA has dropped from 70 to 5 in that time – it is currently dropping about 0.5 units per month. The trial is for pre-chemotherapy men like myself. Original trials of Enzalutamide on post-chemo men gave a survival benefit of about 4 months so I am already way better than that.

When the trial finishes after using both drugs I should be in a much better position to attack the residual tumour with radiation than when my PSA was 70. I am very pleased with these positive results and even better the cost is nil to me – I could simply not afford these drugs pre chemotherapy otherwise. I hope also the trial results can help other men down the track.

The time this trial is buying me is being put to good use. I am very active in support programs for men with advanced prostate cancer and as a consumer representative on many cancer research projects and committees. Family time with young grandchildren is also hugely important even if the benefits are difficult to directly measure. The clinical trial is a win win win result on all fronts.

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