Patient profile: Tony Robinson

Tony Robinson lives in Sydney and was involved in a clinical trial for Hodgkin’s lymphoma, through Sydney Local Health District’s Concord Hospital. Tony outlines below why he got involved in the trial, why clinical trials are so important, and how it gave him the opportunity to help people in a similar position in the future.

First up, what made you decide to get involved in a clinical trial?

I got involved in the trial because I recognised that I could not change or alter the situation I was in but I may have the opportunity to help those people in a similar position in the future. If something was discovered as a result of my participation that either made life easier for someone else or ultimately contributed to a cure then it was well worth participating. Also, it was a well-established international trial that was well supported and researched.

Can you tell us a little about the trial? What role have you had?

I was part of the RAHL trial to see if PET scans could be used to make decisions about treatment for Hodgkin’s Lymphoma. Researchers thought a PET scan could show doctors how well ABVD (a chemotherapy regimen used in the first-line treatment of Hodgkin lymphoma) had worked. In this trial everyone had a scan after two months of treatment with ABVD to see if it was safe for some people to have less bleomycin (a drug that causes lung damage). Half of the people who had a negative scan continued their treatment without bleomycin (AVD) and the others continued to have all of the drugs.

The aims of the trial were to find if:

  • PET scanning after two treatments of ABVD was a reliable way of making decisions about treatment
  • it was safe for people who had a negative scan to stop having bleomycin
  • more intensive chemotherapy helped people who had a positive scan

The role I played was to join a well-established trial and provide a variety of statistics to the clinical researcher. Including, but not limited to blood results, weight changes, emotional evaluation questionnaires and the results of the PET scans. I was randomly assigned to continue with the full treatment plan for a six month period. After treatment I was monitored at regular intervals and continued to contribute my results to the trial.

How did you find out about the trial?

I was told about the trial by my Haematologist who informed me of all the details of the trial. This included why they were conducting the research and what they were trying to achieve.

What have been the advantages for you participating in the trial?

From a medical point of view it meant that I would get closer monitoring and more tracking of the disease. I believe that decisions should be made using an evidence based approach and anything that contributed to providing more data would enable my medical team to treat me and others with my condition.

What potential do you see for the trial to help more people? Is this something that more people could benefit from?

The results of the trial have been published in the New England Journal of Medicine 23rd June 2016 so I was able to read the conclusions in an academic paper and see how the research would help people in the future.

As a runner and a keen participant in exercise I asked if there would be any side effects that would affect my ability to exercise. I was told that one of the chemotherapy drugs, bleomycin had the potential to scar my lungs. Having returned to exercise I can feel a tightness, a pulling effect where the lymphoma used to be when I engage in a moderate to hard training. As a consequence of the trial the researchers discovered when they can remove the bleomycin from the treatment regimen so now fewer people will experience the same side effect.

Also, the reduction of the number of drugs in the treatment of cancer will reduce the suffering that future patients will have to endure.

Would you encourage others to get involved?

Yes, I believe that others should get involved if it is right for them but they must do their own research and ensure they know what is involved. Discover what the research is trying to achieve, the costs, the benefits and ask questions.

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Page Last Updated: 05 June, 2017